My Survivor List

Bucket List's cousin

Hi friends, I’m thrilled to see Rare Disease Girl is read across 11 countries. A special hello to my subscribers in Belgium, Australia, and India. Thank you for reading. Say hi in the comments sometime!

Today, I’m creating a new kind of “bucket list” called a Survivor List. A list you make after you survive catastrophe. xoxo

My Survivor List

When I came home, I had lots of goals. Carry July. Walk. Go back to work. Basic functioning.

When I got off dialysis, the list became more ambitious. Go to Hawaii. Ski again. Finish my book. Visit my family. 

Now, a year later, as it becomes more apparent that my life will continue to go on, I’ve expanded my Survivor List in a way that isn’t about travel, but how I want to grow and learn as a human. 

So without further ado, here is my Survivor List:

1. Learn to accept my body’s turbulence. Love my body despite disease. This beautiful vessel is the home of my soul- and it has carried me well through all the challenges.

2. Give myself the same patience and grace I give to others.

3. Be a good mother. Not a perfect mother, but a good mother. A mother who stops every time her child says “Watch me!” A mother who dances.

4. Be a good partner. May my love be a fuel for gratefulness, acts of appreciation or support, and to always find fun in my relationship with Zach.

5. Always make sure my friends know I love them.

6. To assure my mother that I know she is always with me, however far away we are, and I always love her.

7. To know my worth.

8. Earn what I’m worth.

9. To reach my potential. May my work lead me to a place of joy, satisfaction, and purpose.

10. Be of service to those who would get comfort and motivation from my journey.

11. More dessert.

12.  Let every step be an appreciation of how far I’ve come. Walk in resilience.

13. Change perceptions of what illness and chronic disease looks like in our culture. 

14. Create opportunities to surprise myself.

15. Give grace and patience to strangers. Always remind people they are beautiful and capable.

16. Comfort the sick and scared. Give them promises of hope.

17. When I make mistakes, I hold myself with love instead of judgment.

18. Make friends with guiltless rest.

19. Tell stories that delight and inspire.

20. Age with excitement.

21. Live a life that helps people love their own lives more.

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What’s on your Survivor List?

Reader Comment of the Week

This is so well written! I love the way you focus on the small moments of humanity that you experienced. - Elizabeth

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If you’re new here and wondering, “what happened to this lady?” read The Fighter Still Remains Part 1. xo

I started writing this when I was on dialysis. It’s intended for folks on a healing journey or those caregivers and family supporting someone with a challenging diagnosis. I hope to include excerpts here as I write. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Also names have been changed for most of my medical staff.

Thank you to Roy Lenn and Richard Burwick for your founding level donation.