Mallory Smith lived and died with Cystic Fibrosis. Mallory wrote, "Salt in My Soul: An Unfinished Life." In this fifteen episode of Young Adults with Complex Conditions, I speak with mother, Diane. Mallory was Captain of her own ship, lived HAPPY, and shares many lessons with us. Heart-warming affirmation! Tragic, tragic, tragic!

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Episode Notes

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Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here
Contents with Time-Stamped Headings
to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Introducing Diane Shader Smith 00:55. 1

Health IS fragile 04:40. 2

Self-care. A common question. 06:05. 2

Managing and coordinating care 08:04. 3

Who’s doing what? Team roles. 14:40. 4

Captain of her ship and the Control Freak 15:54. 5

Unforgiving Cystic Fibrosis 18:40. 5

Gifts and superpowers 22:24. 6

The ship reflects its Captain 25:24. 7

Lessons from Mallory 26:45. 7

What does healthy look like now? 33:23. 9

Reflection 38:37. 10
Links
Find the full series here
Mallory's 65 Roses - book Diane wrote
Salt in My Soul on Amazon

Protecting Sleep in the Hospital, for Both Patients and Doctors

Documentaries by the people making a movie about Mallory The Invisible War, The Hunting Ground
Phage therapy  An experimental treatment that may have worked for Mallory and shows promise
LungesforLungs

Notes
Credits
Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer
Dustjacket Photo by Diane Shader Smith

About the Show
Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  We will listen and learn about what it takes to adjust to life's realities in healthcare’s Tower of Babel.  Let's make some sense of all this.

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The Show
Introducing Diane Shader Smith
My Opa, my father’s father, survived the Bergen-Belsen Concentration Camp. He also survived my dad’s death. He told me that he suffered more from losing a son than the concentration camp. I’m unhappy to say that I share the experience of losing a child with my Opa and Diane Shader Smith. Diane’s daughter, Mallory, kept extensive journals about her life with Cystic Fibrosis. Diane continued the bittersweet journey of shaping those journals into the book, Salt in my Soul, an Unfinished Life after Mallory died. I’m beginning and ending the conversations in this Y...