by Stacey Philpot
I’ll be honest. This isn’t the story I would have chosen. In the story I would have written, I would have looked like a super model. But the really approachable kind that everybody likes. I would have also been really funny. Oh, and rich. I would have traveled often, seen the world and breathed in its beauty and wonder. I would have come home from each of my trips with a greater, deeper understanding and appreciation of the world and it’s people. When not traveling the world, I would have spent my days rescuing it’s inhabitants who found themselves without a voice. The hungry. The sick. The oppressed. The imprisoned.
I wasn’t asking for much from my story. Just to save the world while looking flawless every moment of everyday and being adored by everyone.
But that isn’t my story.
I was supposed to save the sick not be the sick.
And sometimes when fighting feels more like losing than loving, I have to remind myself fighting has it’s place in this world. Because you see, my fight, your fight is meaningful.
- Our fight reminds people some things are worth fighting for. On the days when I am battling some infection and I find myself too sick to play princesses with my youngest or too tired to watch YouTube videos with my oldest, it feels like I’m failing. When I crawl into my bed to sleep instead of interact so my body can fight off infection, it often feels like I’ve failed as a parent. But as we give our bodies what they need to fight rare disease and chronic illness, we teach our children, we remind our world and the people in them that some things are worth fighting for. By not giving up, we’re raising up fighters behind us and I’m pretty sure that’s saving the world in its own way.
- Our fight helps others find their strength. On the days when I feel like I just can’t do it anymore, I almost always encounter another rare disease warrior who becomes a cheerleader. These warriors help me find a strength I didn’t know I had. Our stories inspire others to keep going, keep fighting. Look at us, we’re saving the world. And I bet we look darn good doing it, as well.
- Our fight mobilizes others. It calls greatness forth in doctors, nurses, researchers, and scientists. Our fight, our stories create an awareness which may be the very thing which springs the right mind into action, bringing an end to our disease.
Our stories, our lives matter even if they don’t look the way we might have written them. Whether or not today you feel like a super model, or the hero of your own story, I’d like to remind you that your fight matters! Keep on fighting, rare tribe!
Stacey is an author, goofball and avid reader. You can find her blog at chronicallywhole.com where she endeavors to encourage other warriors like herself along in their journey of battling for health and discovering wholeness. She is mom to Hayden and Avery, stepmom to Julie and wife to Ryan (a smarty pants who works at NASA and logs their whole life on spreadsheets and pie charts, true story!) She has a strange affinity for eating whole meals in bed (don’t tell anyone) and is convinced smelling old books will make her smarter.