What, A Decade?

My life completely changed 10 years ago - for better AND for worse

My rare life journey began 10 years ago.

Did you know the sternum is connected to the rib cage, and that the ribs wrap around you like big bear hug? Okay, I knew that in 2014, but I didn’t fully appreciate it until a surgeon cut through my breastbone and cranked it open to take a look inside. It was December 14th, and he was looking for the thymus gland, which harbored a tumor (a thymoma). Once all this tissue was removed, my neurologist told me, I had a fair change of seeing myasthenia gravis go into remission.

It hasn’t, but that’s another story.

In the fall of 2014, I was diagnosed with MG and began some oral meds that had the symptoms largely under control. MG is a rare, autoimmune, neuromuscular disease in which war-crazed antibodies go on a mission to battle and destroy the chemical at the neuromuscular junction responsible for voluntary muscle movement. This war plays out in different ways among different people; some experience nothing more than a drooping eyelid, while others fight multiple crises that land them in ICU fighting for their lives.

I tend to be extreme and dramatic, as my family will tell you, so my body opted for the latter.

While I had been wrestling with symptoms for a year while seeking a diagnosis, my health journey really began in second half of 2014. The diagnosis. The medication. The news about the tumor. The surgery.

And the unraveling.

While having your chest cut open is nothing to sneeze at (literally … sneezing hurts, folks), I was recovering well from the surgery. But six weeks in, things began to spiral out of control. The meds stop helping. My speech slurred. I lost the ability to swallow. I degraded fast. In early February 2015, I walked into Neuro ICU at a Birmingham, Alabama, hospital, and would not leave for almost seven weeks.

And even when I did, a tube dangled from my belly, my only means of eating and drinking because I was still unable to swallow.

That was a time of great uncertainty, and I’ve had a few such phases since. But reaching the 10-year mark of the beginning of The Great Trouble has significant meaning for me. It’s a milestone, one that at times I wasn’t sure I’d reach. As with all such milestones, it’s an occasion to reflect — on how my family, career, and life in general has changed since then.

In a few weeks, we will celebrate Rare Disease Day. It will be a special one for me. I have learned much about living with a rare disease, and have much to learn still. Beyond that, I hope my story can help others who are in the early stages of navigating a similar journey.

This newsletter is about learning to live a rare life, which goes well beyond coping with the effects of a rare disease. 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.

Ten years later, I’m still working on the answers myself.

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Do you know someone who wants to discover and pursue what a rare life means to them? Please pass along this newsletter. We’ll continue to encourage one another as we grow this community.

Question? Thoughts? Please share in the comments!

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