Did one woman's journey of healing and of self-discovery need to be so tortuous? To answer that, consider the elements of her 'self-guided journey' and the key questions she learned to ask.

At the Journey Guide Project (JGP), we help patients become experts in their own stories. And we help practitioners learn to listen more, step back, and see that their knowledge is only part of the whole picture.

You wouldn’t settle for one-size-fits-all clothing—so why do it in medical care? When you start with your own story, you can shape care that actually fits.

This essay follows one couple’s journey through dementia—not just the practical challenges, but the deeper work of staying present, grieving change, and rediscovering connection in unexpected places.

The truth is the wisdom to make good choices is often already with the patient. We talk about “shared decision-making” in medicine, but it’s not always easy. At the Journey Guide Project (JGP), we help patients become experts in their own stories. And we help practitioners learn to listen more, step back, and see that their knowledge is only part of the whole picture.

This is the purpose of a Journey Guide. To help patients bring their wisdom to their medical journey. To be full participants in their medical decisions and to be clear eyed about what medical care can do.

Today’s health care isn’t wrong, it’s just incomplete. Journey Guides help to bring the patient narrative into the medical experience to help us achieve our best and most complete care.

We tend to think of our goals and preferences in the way we look at a restaurant menu. We know what we like, what we don’t, and make our choice.

Participating in our own care can take more thought and work.

We can learn to be more thoughtful about understanding the limitations of medical care, and how options apply or don’t, to our unique narrative.

It all begins with an idea.

My Journey Guide experience has allowed me the dignity of exploring my own healing path and has given me the gift of connecting with my body in a powerful way.