Growing A Rare Community
We have much to learn from one another as we live a rare life
There is so much I don’t know.
That has become even more evident in the weeks leading up to the launch of Live Life Rare. This project has been on my mind for a few years, taking various forms before landing on the very excellent Substack1 platform. As we recognize Rare Disease Day 2021, I am excited to share with you the framework we are building in this first phase.2
Living with a rare disease is a personal experience. It is lived out, however, through our relationships. Our caregivers are, of course, most impacted. Our close family and extended family are part of that fabric. Our physicians play a significant role. Beyond these, however, are other people who are also learning to live with a rare disease. And thanks to publishing platforms such as this one and social media channels such as Twitter, the rare disease community is broad and enriching.
I want to serve that community by sharing not only my experiences, but the stories of others living the rare life. We all have our sources of inspiration and our practical life hacks, and we all become stronger when we share them.
Live Life Rare will also curate and share resources to support the rare disease community. I’m on a journey to discovery how to live a rare life, and I want to become part of the greater community along the way.
Please read below to see how I intend to structure this publication. This foundation will help you know what to expect, and guide me as I work to assemble a newsletter of value to anyone looking to live a rare life.
Your Rare Story
An important part of this newsletter will be the stories of people just like you, just like me, living each day with a rare disease. You are more than a patient. You are not defined by your diagnosis. You may suffer, but you are not a sufferer; you are a human, someone who loves and is loved, someone with dreams and passions, someone with much to offer us all. As we build the Live Life Rare community together, let’s share and learn from one another. Click below to take the first step in sharing your story.
I’m an audio addict. I find encouragement, ideas, and inspiration in songs and interviews and podcasts. The human voice is a powerful medium that evokes emotion, commands attention, and communicates more powerfully than any method of sharing information.3 The same can be said for music. I want to tap into that in our publication.
I’ll begin by sharing this beautiful tune from the incomparable Tommy Emmanuel. Though he’s the greatest acoustic guitar player alive, his technical proficiency is overshadowed by the emotion and relatability of his music. Here he offers a gorgeous take on John Lennon's "Imagine." My wife and I had the opportunity to see Emmanuel perform in the intimate Songbirds North in Chattanooga, Tennessee, in 2019. He's such a friendly, funny, engaging performer, which made it an even more special night.4 Listen closely for Emmanuel’s whispered prayer as the track closes. There are two more, equally great tunes on the EP, which was released in November.
Some of the greatest value you will receive from this newsletter, I believe, will be the resources I bring together under the following sections. There is so much helpful content across the rare disease community, and my job will be to find those sources of information that you may not have stumbled across yourself.
The Rare Mind
These topics will help us learn, expand our perceptions, and improve how we think.
The Rare Body
These resources will help us care for our physical health.5
The Rare Spirit
Here you’ll find resources to grow our inner selves, nurture our faith, and inform how we relate to others.
As you think about these sections, please let me know your thoughts on other categories I should consider.
Help Us Build This Community
This is a collaborative project. We aren’t just publishing, we are building a community. And we need your help. How?
1) If you came across this on the web or someone shared a link with you, please subscribe. There is no cost.
2) If you enjoy what you’ve read here today, please share it with people in your family or circle of friends.
3) If you believe in this project and would like to help us expand it, please share it across your social networks.
4) If you have a question or helpful thought, please share it in the comments.
5) And don't forget to click that little heart icon :)
Thank you, I really appreciate your help in growing the Live Life Rare community. Together, we are going to build something of meaning.
So why Substack? Before starting a communications and marketing company in 1996, I spent several years working as a reporter and editor for a rural newspaper, as well as freelancing for numerous other publications. I carried that journalistic approach into our work for clients. As our company grew, we attracted most of our talent from newspapers in the region. Today our firm has many decades of journalism experience under our virtual roof. “This is where former newspaper folks come to heal,” someone once said of our company. As I researched platforms on which to start my personal project Live Life Rare, I become increasingly impressed with what Substack is trying to accomplish. It may not save the world, but after reading articles and listening to interviews with CEO Chris Best I believe Substack has brought to market a viable solution to some of what ails the media/citizen relationship in this moment. I want to be part of that. Granted, Live Life Rare is not a straightforward journalistic endeavor, but you’ll see flavors of that. And I plan to bring the same commitment to quality editorial oversight to this project that I’ve applied to my work over the past 30 years
I say “first phase” because I know future iterations of this newsletter will build upon input from readers who will help me better understand what they want to see from this resource. Please email me at firstname.lastname@example.org with your insight.
Yes, this probably mean a Live Life Rare podcast is somewhere in the future.
Gah, I miss live music. That is one of the things my family and I most look forward to as such activity becomes safe again in a post-covid world.
I am not a doctor. I do not play one on TV. I did not stay at a Holiday Inn Express last night (though I have in the past; they’re great.) Nothing in Live Life Rare is to be construed as medical advice. Please talk to your doctor before trying anything that would impact your health in any way. (Of course, that doesn’t just go for this newsletter.)