Scleroderma Awareness
POEM: I DIDN'T KNOW
"I didn’t know back then that life would change forever. I didn’t know what pain was then. I didn’t know the sacrifices and allowances I would end up making. I didn’t know my hair could hurt. I didn’t know that I would have to give up the things that brought me the most joy ...because I just couldn’t do them any more. I didn’t know how my limits would change from one day to the next. I didn’t know I’d have to fight so hard for what I need.
I didn’t know I could be okay with wearing socks that don’t match. I didn’t know I could cry beyond the point of tears. I didn’t know how strong I could be until I was forced to be. I didn’t know I could live for weeks on applesauce and Sprite. I didn’t know I could get lost in Target. I didn’t know I could crack a joke and laugh in the worst of situations because I just couldn’t cry anymore.
I didn’t know I could lose what felt like everything and still feel as though I had everything I need. I didn’t know I could keep going past the end of my rope. I didn’t know that when I felt the most alone and exhausted, someone, somewhere would inspire me to fight one more time. I didn’t know I could sleep 20 hours and still be tired. I didn’t know I could fall asleep anywhere. I also didn’t know I’d regret it when I woke up.
I didn’t know that nothing beats stupid comedies or veggie tales on a bad day. I didn’t know just how much pain I could stand. I didn’t know how desperate I would feel sometimes. I didn’t know how much I’d have to learn. I didn’t know how much I’d have to advocate for myself because there was no one else to fight for me. I didn’t know how good fuzzy socks feel.
I didn’t know I could love God and hate Him at the same time. I didn’t know sometimes prayer would be all I’d have. I didn’t know some of my best friends would be people I’d never met. I didn’t know that I wasn’t alone. I didn’t know doctors could be wrong. I didn’t know that there were others going through this. I didn’t know there was support.
I’d say I wish someone had told me all of these things back then, but I do know I wouldn’t have believed them."
I didn’t know I could lose what felt like everything and still feel as though I had everything I need. I didn’t know I could keep going past the end of my rope. I didn’t know that when I felt the most alone and exhausted, someone, somewhere would inspire me to fight one more time. I didn’t know I could sleep 20 hours and still be tired. I didn’t know I could fall asleep anywhere. I also didn’t know I’d regret it when I woke up.
I didn’t know that nothing beats stupid comedies or veggie tales on a bad day. I didn’t know just how much pain I could stand. I didn’t know how desperate I would feel sometimes. I didn’t know how much I’d have to learn. I didn’t know how much I’d have to advocate for myself because there was no one else to fight for me. I didn’t know how good fuzzy socks feel.
I didn’t know I could love God and hate Him at the same time. I didn’t know sometimes prayer would be all I’d have. I didn’t know some of my best friends would be people I’d never met. I didn’t know that I wasn’t alone. I didn’t know doctors could be wrong. I didn’t know that there were others going through this. I didn’t know there was support.
I’d say I wish someone had told me all of these things back then, but I do know I wouldn’t have believed them."
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