Rethinking the Wind

“And the wind that blows the candles out, well it also fans the flame”

This is a line from one of my favorite singer/songwriters, Pierce Pettis. It’s been stuck in my head lately. Why? Because it communicates a thought that has become increasingly real to me over the past few months.

I was diagnosed with the rare disease myasthenia gravis in 2014. In the years since, there have been phases when the harsh winds of this disease have blown hard against me, threatening to extinguish so many flames. My goals. My passions. My dreams. Even my very life.

The past few months have been particularly difficult, with several hospitalizations and now a surgery scheduled for Friday. And yet during this season of harsh winds, I’m beginning to see more clearly than ever that this thing I struggle with is more of a gift than a burden. It may seem like it’s blowing out candles, but it’s also fanning many flames that otherwise might not be burning at all in my life.

What would my life story be without the undercurrent of this rare disease? When I reflect on my career as a small business owner, for example, I realize that the changes I had to implement in my agency after a hospitalization in 2015 led to a stronger company, taught me many lessons about operating a business, grew the value of our company, and ultimately positioned us to sell it to a strategic acquirer in 2020.

There have been other seasons wherein the limitations imposed by this disease have altered my perspective or caused me to recalibrate my direction, shaping the path my life is taking in an ultimately positive way.

Wrestling with myasthenia gravis has given me so many adventures and stories to share with people through my writing (and now a podcast). Almost every time I catch myself thinking, “People are tired of your little tales, Stephen,” someone tells me how my words have helped them better understand rare disease or somehow inspired them in their own walk upon this earth.

As we prepare for Rare Disease Day, I am focusing on the flames that MG and its related issues are fanning in my life. A desire to pour into the lives of my family, especially our only grandchild. A passion for making the arts, music, creativity, and the Creator Himself more central to my family’s life. A focus on living more intentionally. A willingness to serve others who struggle against their own harsh winds. A drive to help others discover and pursue what a rare life means to them.

You may not have a rare disease, but Rare Disease Day can still be a time of reflection for you. Have you experienced hard times, tragedies, or other adversities that blow hard against your soul? How can those winds that threaten to extinguish your candles also fan positive flames that could enrich your life and the lives of those around you?