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The Calculations That Go Through My Head on 'Good' Chronic Illness Days

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It’s a stunning day here on Florida’s incredible Treasure Coast. The sun is sparkling and the sea breeze is blowing through the french doors onto my patio. Maybe I should head over to the beach for a walk? I’m feeling relatively good today and the neuropathic pain in my legs is bearable.

Once the idea forms in my head, the calculations start. If I go for a walk on the beach, my mood will most certainly improve. With that, what will be the cost? Will I be able to make dinner for the family later or will the pain render my legs unusable? Maybe one evening in bed is worth it for a few hours in the sun. But last time the trade off was days in bed in agony. Is that worth a walk in the sun?

And so the calculations unfold like a spreadsheet in my head with inputs and outputs, columns and rows, but none of it adds up. There is no balance.

I have a minor in psychology, took tons of classes in graduate school, as well as workshops in related subjects during my 20 year career in the nonprofit sector. One of the hallmarks of the human experience is that action leads to outcomes and that is predictable. It’s cause and effect. It’s Pavlov’s dog. It’s training pink-eyed rats in rat lab for psychology 201. Predictability is a universal truth.

Until it’s not.

A picture of a Florida beach.

With chronic illness and disability, the number one constant is that there is no constant. The only thing one can predict is that nothing is predictable. Those very facts wire our brains for fear.

I have a complex post traumatic stress disorder diagnosis from medical trauma and I’ve been working through that with a therapist weekly for the last couple of years. The lack of predictable outcomes for any set of actions continues to affect me. When I worked, I was known as “data girl” because I craved the predictable. I wanted to know for certain that a set of activities would produce the desired effect. I wanted to lead programs that would predictably help (not hurt) people. I wanted to use resources wisely.

In my current life that is unattainable. My current life is all about body surfing an ever changing environment of unpredictable waves. Often in meditation, I envision myself on my back floating in the salty water. I can hear the waves crashing on the shore in the distance, but they are not overtaking me.

In fact, the opposite is true. The sound is pleasant and in its ever changing way…predictable. I’m healing.

Getty Image by johavel

Originally published: April 27, 2018
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