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Standing in my kitchen hulling strawberries and bagging them to freeze, I shuffled from leg to leg as if dancing to music only I could hear, but this was not a dance. This was one of many quiet little, mostly unnoticed by other people, coping mechanisms that I use to manage my daily pain. You see, I have a condition called small fiber neuropathy which is a direct result of having sarcoidosis. This condition gives me nasty sustained burning sensations in my legs. I cannot stand still for long periods of time without first noticing and then becoming rather bothered by this flaming feeling. So every now and then I dance a subtle little rhythmic dance…back and forth, back and forth, back and forth…left foot, right foot, left foot, right foot…

Generally I would say that I am a pretty stoic person. It’s only on a rare occasion that my pain will show itself. It’s a lot like the Loch Ness Monster or Big Foot. Some say they have seen it but no one can prove it. There are sightings of a small grimace on my face but they are fleeting. They are fleeting because for the most part, I have come to accept that my body is no longer my friend. I have learned to adapt to its ever migrating aches, sore spots and bruising agony without complaint. I conserve my energy for better things, like subtle dance steps standing the kitchen.

The thought of dancing my way through life is sweet, much sweeter than the realities of my sarcoidosis and all that comes with it. I like the idea that I am dancing rather than coping. Most of the time, I don’t even notice the rhythm of my own steps. They have become a natural part of my daily life but every once and awhile I miss a step as reality pulls me out of sync with my pain and I stumble. In that split second of missed timing, I become acutely aware that my life is irrevocably changed and this feels like torture. Like any good actor though, I know the show must go on and before long and usually without detection from the audience, I find my stride and fall back into tempo with the beat of my sarcoidosis life and dance again…back and forth, back and forth, right foot, left foot, right foot, left foot…