Manifesto

“It takes more courage to examine the dark corners of your own soul than it does for a soldier to fight on a battlefield”
― W.B. Yeats

We each get to set the tone of our own life. The language and metaphors we use determine how we engage and hold the complexities and challenges that make up our lives.

For me, Cystic Fibrosis is part of my life and the work that it requires is real. But it is continuous, and permanent. I have had to figure out how to hold that reality in a way that doesn’t crush me or tire me out too quickly. Sustainability is key.

War is often the preferred metaphor for “battling illness.” And it can be helpful and motivating to some people. I am not one of those people.

What has evolved for me is a softer language that doesn’t make me an isolated soldier fighting a war I ultimately cannot win. For me, when I look at my life, and the realities I have to navigate, I don’t see a battlefield. Rather, I see a lot of “scope for the imagination.” When I look with artist eyes at the ever changing landscape stretching before me I am inspired and curious to walk a few more feet or to stop and rest to see what is here. There is so much more to see than illness, hospitals and rigorous routines. There is relationships, spiritual growth, funny stories, and a million art prompts to follow…. I can’t hold my breath until life gets better. I’ll miss it all if I do. There have been and will continue to be seasons that require more intense focus, strength and courage; the hills and valleys before me are getting a bit more rocky for sure. However, even in difficult times the metaphor of war feels heavy and awkward.

I want to live each season with a consistent ethic of curiosity, listening, engaging, creating and loving. In all the highs and lows and times I may need more help, please don’t forget, I’m not fighting, I’m living.