Why I Talk About Living a Rare Life

Life Life Rare

Hello, I'm Stephen Smith, and welcome to the premiere episode of Live Life Rare. This podcast is a companion to the newsletter that you will find at liveliferare.com. So what is this work all about? I guess we could sum it up by saying that Live Life Rare is my attempt to help you discover and to pursue what a rare life means to you. Really has its roots in the fact that I wrestle with the rare disease myasthenia gravis, and through the years, living with this disease has taught me a lot about living life in general. About discovering what it means to live outside our comfort zones, to live with the challenges that life brings us. To live in a way that steps outside of the normal, that steps outside of the unintentional, that steps outside the paths that we expect to walk every day, the things that are considered normal and to live a life with intent.

I've been working on this project for a while, and this year in particular, roadblock after roadblock has come my way, including several unplanned trips to the emergency department that landed me in our university hospital. For several days across the spring and summer of this year, in total, I spent 32 days in the hospital, and a few of those days even on a ventilator. And I must admit, there are times that I questioned, "Should I even continue this process?" Every time I go to write a new article for the newsletter or plan to start this podcast, some new challenge would come my way and I would have another setback with MG.

But then I ran across a quote recently from the professor and author Brené Brown, and it goes like this. "One day you will tell your story of how you overcame what you went through, and it will be someone else's survival guide." I thought a lot about those words, and they really did bring me some clarity. And I thought about how when I send out a newsletter, post an article on Facebook, engage with people online who are also dealing with challenges, including rare diseases and and other issues, that it seems to be an encouragement to them to see someone else struggling with the same thing and trying their best to live in a way that is still a very full life.

As I share these issues, writing about it and now podcasting about the rare disease experience, it helps me process these events. But, you know, it's also creating an archive of lived experiences that may well help others along their journeys. There have been times since my diagnosis in the fall of 2014 that I've had all my symptoms under control, to a large degree. Other times, I've floated somewhere between being mildly inconvenienced to fighting for survival. And throughout these stages, yeah, it would have been helpful to read and to listen about others who've walked this path specifically, especially in the early years of my journey. Rare disease is a very personal experience. Myasthenia gravis in particular can present in wildly different fashion among otherwise similar patients. And yet, reading the experiences of others can help patients and caregivers understand what is possible and perhaps be more prepared when circumstances change.

Just as important to the mission of this project with the newsletter and the podcast is the encouragement that I hope readers will take from these stories. MG has put my family and me through some tough times the past few years. And yet we have survived and drawn closer through the challenges, actually. Some of the things I've learned include:.

It's hard.

You are not alone.

And you can get through this.

You know, I really love Brene Brown's concept of a survival guide. I don't know if that's an accurate label for what this project is trying to be, but I do hope that those who struggle with MG, with rare disease, and with the adversities of life in general, will find something here to help them move forward for one more day. That's what I'm doing right now as I try to regain control of myasthenia gravis. And this podcast and the companion newsletter are a big part of that.

Thanks for joining me on this journey and if you enjoy this show, please keep listening to new episodes. Share them with those that you know who are struggling, caregivers and those who suffer from rare disease. But also, we're going to be touching on topics that are a little more broad in general, in terms of helping people see that the pathway they choose through life can be something unique, something intentional, something rich and beautiful. That they can indeed live in a rare way. Thank you for joining us on this journey. I'm Stephen Smith and you're listening to Live Life Rare.