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Hold it without shame

Author: Johanna
Published on: Tuesday the 7th of May, 2019

I’ve been forced to do some real soul-searching lately. I’m trying so hard to create meaning (which, en passant, I have to find a whole new definition for), keep up with others, and prove that I don’t let CF stop me, that I end up missing out because I completely exhaust myself and all my reserves. And so I’m faced with the question, ‘How do I contribute when I can’t be relied upon?’

In my attempts to stop CF from running my life, I have given it every opportunity to take charge.

I can’t keep comparing myself with my healthy peers. I find myself at a crossroads, grappling with the weight of my expectations and reality. At moments like these, the insights of those around us can shine a guiding light. Just the other day, my friend, Elizabeth, shared a perspective that struck a chord. She believes there must be a way to hold all of this that doesn’t have to be so heavy and shameful. I have to start looking at my life and say: This is my normal life and I shouldn’t have to hide it anymore. It has to be okay to be tired and sick. And from there, I have to find a way to participate in life that means I can partake of more.

I am reminded of May Sarton’s words:

‘Imitate the trees’

Let go. Cut off the excess. Prune. Wait. Watch. Grow deep.

cystic fibrosis living the truth reflections

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