RARE MAMAS RISING- EPISODE 8

The Power of Storytelling in Community Building with Loving Large Author Patti M. Hall

Patti M. Hall is a writer, collaborator, book coach, and founder of the Story House Mastermind. She is also the author of Loving Large: a mother's rare disease memoir. Patti's life was pitched into an abyss of uncertainty when a golf ball-sized tumor was discovered in her teenage son's head, and he was diagnosed with gigantism, a disease of both legend and stigma. After scrambling to access a handful of medical experts in the field, Patti learned that her son could grow uncontrollably, his mobility could be permanently limited, and his life could be cut short without timely and aggressive treatment. Patti's attention shifted fully to her son, away from her relationships as well as her own career and health. Patti's story is all of our stories. In fact, Patti wrote Loving Large for parents like us, whose children suffer from rare, chronic, or incurable diseases. In this episode, Patti gives a peek into her life, her book, and lessons learned along the way. Patti illuminates how sharing our stories has the power to build community and why a community is the very thing we need when navigating rare.

EPISODE HIGHLIGHTS

In this episode Patti & Nikki dig into:

• Receiving Aaron's diagnosis and the aftermath
• Patti's experience scrambling to find doctors, research, and resources all while time was ticking away
• How the notion of "advocates as experts" has evolved during Patti's time in rare and why forming partnerships with care providers is necessary
• Navigating ever-changing symptoms and circumstances and deciphering between big and small things on the rare ride
• The many roles Patti played while being a caregiver to her son including being a story keeper and a promise maker
• The story behind her book Loving Large and how she rewrote it entirely
• The bond she developed with her son while being "cellmates" together
• How we, as rare moms, have to relieve ourselves from the guilt of being away from our kids long enough to take a break and shut off the "monkey mind."
• The importance of sharing our lived experiences because community is how we survive and endure

LINKS & RESOURCES MENTIONED

Patti M. Hall

https://pattimhall.com/loving-large-book/

https://www.instagram.com/patti_m_hall/

https://www.facebook.com/pattimhallwriter

Global Genes

https://globalgenes.org/

Acromegaly Canada

https://acromegalycanada.ca/

CONNECT WITH NIKKI

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]