What does it mean to live a rare life?

Live Life Rare is more than a publication title. It’s a mantra. A call to action. A rallying cry for a community of people who want to create a life for themselves that is richer, more fulfilling, and more giving than what the world tells us a good life is all about.

You can live a creative life, a life marked by intention, by purpose, and by your definition of abundance. This newsletter’s intent is to help you step out of the ruts of the daily grind; to remove yourself from the raging streams of bias, grievances, polarity, and conformity that are tied to the supposedly “unavoidable” and “inescapable” traps that too often appear to be the only way to live a modern life; and to discover and pursue what a rare life means to you.

Floating, flat and still

I don’t know who originated this quote, but “even a dead fish can swim downstream” paints a powerful picture of the state so many people find themselves in these days. Not too many years ago, this described my life. Though seemingly alive and flopping about in the water, I was caught up in the flow and moving fast in the current of career, achievement, and the pursuit of the modern definitions of success.

The turning point for me, or at least the beginnings of it, came in 2014 when I was diagnosed with the rare neuromuscular disease myasthenia gravis. A rare disease can impact every part of your life. How do you cope? What adjustments can you make? How do you get the most out of life when your life becomes so different?

The answers to those and other questions were slow to develop, informed by events that were at times quite dramatic. I’m still learning to live with a rare disease while reworking my career and family life. As such, Live Life Rare is devoted to exploring what living a rare life can truly mean — for myself and for the readers of this publication. This is a collaborative effort. Through original articles, curated resources, and first-person stories from our community, I’ll share inspiration, encouragement, and support to help us all build something beautiful from the finite and precious time we are given.

Subscribe to get full access to the newsletter — straight from our community to your inbox. And if you like what you read, please share with those you love who desire a life beyond the banks of a downstream flow.

About the author

Stephen V. Smith is a husband/father/Pawpaw, writer, entrepreneur, and ICU survivor who lives with the rare disease myasthenia gravis. Following an award-winning career as a newspaper journalist, Stephen founded a small communications firm alongside his wife in 1996. Taking that company from a spare bedroom to the Inc. 5000 list, the Smiths sold it to a strategic acquirer in the middle of a pandemic. “I believe that to live life rare has many meanings,” Stephen says. “It’s not just about the big wins ... it’s also about the small decisions we make every day to face our challenges, choose the better path, and look for the positive in tough situations.”

“The life we want to build, and the legacy we want to leave for those who follow us, depends on how we choose to live today. Let’s determine to live life rare!”
— Stephen V. Smith

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Stories and resources to help you discover and pursue your rare life


Writing about ways to discover and pursue what a rare life means to you. Husband/father/Pawpaw & former newspaper journalist who built and sold a communications agency. Coaches small business owners. Been wrestling with myasthenia gravis since 2014.