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(Happy Monday! Today’s post is from Sande Smith, our communications expert.)

Those of us engaged in social change must ask ourselves, how do we help others see the new world we are trying to create?

It’s easy to get stuck in telling stories of what’s wrong. Yet, while telling stories that show the problem is very important because it helps to wake us up, limiting ourselves to telling those stories won’t get us where we need to be.

That’s why we say, you have to be the change you want to see in the world. . . being the change provides living examples that others can see and then replicate. Even better, be the change and tell the story of how you got there.

I was reminded of the transformative power of being and telling different stories when I saw my dear friend’s new book, Prickly Cactus: Finding Sacred Meaning in Chronic Illness.

I met Concha 9 years ago, when we were taking a writing workshop together. We were both writing non-fiction narratives – mine described my experience with my mother as Alzheimer’s took her memory. Concha’s was called Dancing Still and depicted her battle with systemic lupus erythematosus (SLE).

Here was a woman whose life had been a challenge from the time she and her family emigrated from Mexico. She’d struggled with a new language and culture, battled racism, and worked tirelessly to become an advocate for other immigrant families and children seeking fair and equitable access to education. Plus she was a high-performing professor of anthropology and education. Yet, the disease threatened to take it all away. There were times when she was unable to get out of bed because of the insidious and painful toll that that lupus was taking on her body.

Concha and I would meet and share our writing with one another, pointing out places that didn’t work well in the texts and encouraging each other to keep going. I learned so much from watching Concha as she worked on her book. She refused to give up! She’d submit the book to publishers, and get rejected. She’d consult with other writing professionals, and get advice on how to change it.

She’d rewrite the book, finally rewriting the whole thing at least 3 times, and sections of it many more times. Throughout the process, which took at least 10 years, she continued to transform the pain and discouragement — of the illness and the rejections — until she published Prickly Cactus, a beautiful, life-affirming narrative, this year.

In Prickly Cactus, she describes learning how to turn chronic illness into a doorway for achieving wisdom and building community. She talks about the incredible pain that racked her body, finding a way to create a supportive and respectful medical community, and seeking and finding spiritual guidance. She talks about the challenges of day-to-day living which included redesigning her work habits and life so that she could still earn a living. She describes learning how to rest – for the first time in her life! And she tells a lovely story of dating again, and creating a loving, long-term relationship.

Both the process of watching Concha live the lessons gained as she navigated this journey of chronic illness and reading her book, in its newest form, gives me a sense of joy and hope. Her illness was not just an end, but a beginning.

She says, “We need to speak about illness, about potential for healing, and about building supportive communities around us to transform our lives.” Her narrative of discovery and transformation helps to remove the fear of disease by drawing a map for living with joy, engagement and significance, no matter what.