Thursday, May 10, 2018

What it's Like to go from Feeling Good to CRASH

God cannot fill what is full. He can fill only emptiness – deep poverty – and your “yes” [to Jesus] is the beginning of being or becoming empty. It is not how much we really “have” to give – but how empty we are – so that we can receive fully in our life and let him live his life in us. In you today – he wants to relive his complete submission to his father – allow him to do so. Take away your eyes from yourself and rejoice that you have nothing.

Source: Come Be My Light, Mother Teresa

I wish I could explain what it's like to go from feeling good one day to crashing the next. I never could have understood it before it happened to me, and it's so humbling. 

All that I can say is that I have learned how to walk this very uncomfortable path. I've learned that there are days when plans have to be cancelled, and people may or may not understand. I've learned that some will believe me, some will think it's not real because it's invisible, some will try to empathize, some will give advice trying to help ("Have you tried <insert latest trend>")....and yet none of that will change the reality of the moment when my body goes haywire. 

I'm grateful to have what I need to manage at home, because the ER is among the worst places to go when you have a rare disease. It's especially bad when you're in the middle of a complex diagnosis like me. Their care protocols don't always work for Zebras. 

But even with the tools to manage at home, I still face the reality of feeling truly terrible... and the quiet knowing that I simply need to walk through it. Fractured ribs don't level me...but these crashes...holy cow.  This is the stuff of warriors.

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