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Life With RA: Dance of Pain and Hope

Article #1

By Lu Sobredo

This is my first essay for the recurring feature in my Blog: LIFE WITH RA. The plan is to also include health stories from others who live with and are challenged by a chronic illness. This brief essay is an excerpt from my journal entry in October 2017.

I am remembering with deep longing when my body did what it was supposed to; did what I willed it to do. These days, I must give this body a chance to rest in between the simple physical movements: e.g. standing up, walking and sitting.  I labor to achieve these intentional movements that most others take for granted, that I used to take for granted. It has been four years since the physical symptoms received a name, the diagnosis of Severe Rheumatoid Arthritis (RA). Bio-markers and x-ray images, however, would suggest that I have lived with RA for eight years; the last four years being at its most severe and crippling to date.

Since its official diagnosis, I continue learning about living with RA. I could be quite functional with minimal pain for months. And then, one day as if out of nowhere, I find myself grimacing in pain. I do my best to change how I approach life when this happens. Visited by pain is like being told that to continue playing my instrument, I now must choose a different musical composition. When experiencing a flare up, I hear musical chords that can’t seem to find any means to resolve. Instead of moving about the day to the rhythm of Johann Sebastian Strauss, I am forced to stop on my tracks and slow down the waltz to accommodate the invading dissonance in my body. When this happens, I take a full day just to rest by lounging and napping among fluffy pillows in my bed, and alternating that restful state with some puttering around the kitchen to rummage for treats. Those treats could only be in easy-to-open jars and containers. But I do have one rule I live by under the circumstances: I do not stay cooped up in the house two days in a row. No matter what, I step out of the front door the next day.

It is so easy to fall into depths of despondency when attending to increasing levels of pain in my knees, ankles, wrists and hands. It is so tempting to draw up the curtains in the house and submerge in self-imposed darkness. Thanks to family and friends, prayers and meditation, physical therapy and mental therapy aka professional counseling, it is not where I am anymore. I step out of the house, just to test how much my body could manage when going for a short walk. And before you know it, I am walking, granted in slow and deliberate motion to the neighborhood gym, coffee shop or both. The last couple of weeks have been additionally tough as the pool in the gym where I go for aqua aerobics was being repaired. Great news this morning. The pool is now open again! And I intend to show my RA pain a thing or two. Back to playing ballet and jazz in the water or other kinds of music only I could hear in my head.

This is my life with RA. Even with the best and state-of-the-art medical treatment available to me, I am visited unexpectedly, yet predictably by annoying and debilitating symptoms, symptoms crippling enough to put me in a wheelchair at its early stages of severity. That is the nature of the disease. 

Knowing that RA could betray one at any moment. I have decided this: that it is a companion that forces one to be vigilant, but luckily not paranoid; cautious but not fearful most of the time; and functional but functional only up to a new level of normal. I prefer my new normal with a walking cane instead of a wheelchair. 

Dancing on New Year's Eve at Mile Wine Company: First Time Since RA Treatment. ©James Sobredo

I love visualizing the theme of my next essay for my blog in a well-lit Cafe, not in a makeshift cave in the house. And what I hear is a different kind of music, at times tunes from Sarah Bereilles while I dance inside my head. If truth be told, when at home, I have a few dancing moves left, although awkward and unlike the grace of someone trained in ballet and modern dance in my youth. Awkward and hardly-for-public-display dance moves, they keep me in motion, and I am invigorated to the core.

©Essay: Lu Sobredo 2017
©Photo: James Sobredo 2015 



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