By Stacey Philpot

We spend our days, our years perhaps, searching for answers, for a word that explains what’s happening in our bodies or the body of our child, our sister, our mother, our partner. We believe, we hope, we long for the word to come and bring with it parameters, a treatment plan, HOPE. Surely, if someone can tell us what’s wrong, then someone can fix it, right?

But sometimes all of our hopes and dreams come crashing down with that word. Because when that word is spoken it’s spoken alongside other horrifying words, like “untreatable,” “managing symptoms,” “life-long,” “life-changing,” “progressive,” or “debilitating.” If you are anything like me, it’s in these moments your mind flashes to all the things you’ll never do. The places you’ll never see. The dances you won’t be dancing. The opportunities your children will miss. You see all the life that won’t be lived, all the loss. These things are real, raw and unspeakably hard. But these hard things open the door to some other things I’m truly glad we’ll never do.

Our understanding unites us. Our understanding gives us insight as distinctive as if we wore special eyewear.

You and I, our kiddos? Here are three things, I’m glad we’ll never do, because we see things differently.

  • We see life, not limitations. We look at people and see the beauty of who they are, not limitations. We look at people and see commonalities, not differences. We know illnesses can happen to anyone. We see sickness, not weakness. One thing we’ll never do? Look at others and view them as less simply because they are different.
  • We see opportunity, not obstacles. We know that life can turn on a dime. We understand our lives may never be ideal and yet as rare disease warriors, we know life is for the living. We rise to the occasion; we show chronic illness whose boss. We see opportunities to raise awareness, find cures, increase connections and celebrate this life we’re living. One thing we’ll never do? Give up just because it’s hard.
  • We see beauty, not brokenness. Yes, our bodies have gone haywire. Yes, it’s pretty lame. But we also see doctors and nurses rise to the occasion. We see our friends, our loved ones do the impossible. We watch the best of people called forth time and time again. One thing we’ll never do? Overlook the beauty all around us.

So, yes–––it’s true, our diagnosis may mean there are things we’ll never do. We may never be as shapely as we’d once hoped. We may never travel the seven seas (who are we to disagree?) We may never know what it is to live unencumbered by pain or disability. But we will be the ones people come to when times are tough. We will see life in richer colors, with greater depths, we will be the ones who rush to help others in need. Having known pain, we’ll seek to alleviate it when we see it in others. Having known the loneliness and isolation sickness can bring, we’ll be the ones who reach out. I’ll go ahead and say it–––one thing we’ll never do? We’ll never scrimp on being awesome.

So what about you, what things are you glad you’ll never do?

 

About Stacey

photo-225x300Stacey 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.

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