Why I Believe in Living a Rare Life

Ten years ago, I did what few patients do — I walked upright, of my own volition, into the neuro intensive care unit of a Birmingham hospital. My legs were not the problem. Mobility was not the problem (not yet, anyway). I was there because the rare disease I had been diagnosed with a few months earlier was shutting down my ability to speak, chew, and swallow.

And things were about to get a lot worse.

I had been diagnosed a few months earlier with the neuromuscular disease “myasthenia gravis.” The coming weeks would find me in ICU, on a ventilator, and released with a feeding tube dangling from my stomach after almost two months in the hospital. This would not be my last ICU visit, intubation, or myasthenic crisis.

But here I am, 10 years beyond diagnosis and ready to celebrate Rare Disease Day. Held annually at the end of February, it’s designed to raise awareness of rare diseases and advocate for equal access to care for those affected by them. This year’s date is February 28; and you can learn more at rarediseaseday.org.

I have a saying that serves as a mantra for me: “Live Life Rare!” It has a double meaning. It acknowledges that I’m making the most of a life with a rare disease. It also reminds me to never settle for the mundane, the boring, or the ho-hum.

After all, even a dead fish can float downstream, right? Why be ordinary when you can live a rare life? You may have limitations (don’t we all?), but “live life rare” encourages us to find a way to squeeze joy from the little moments, make big moments happen, and choose to find the blessings in every day we are given.

I have learned much about living with a rare disease since my diagnosis, and have much to learn still. But beyond that, I hope my story can help others who are in the early stages of navigating a challenging journey, whatever it may be.

We all have our battles, health-related or not, and we all have a choice to make. Are we going to let life happen to us, or are we going to be intentional about living a life of uncommon adventure, love, and fulfillment? Those are personal questions that every person has to answer.