When a Rare Disease Threatens Your Livelihood — and Your Life

Being diagnosed with myasthenia gravis helped me redefine my life and set my business on a new and better course.

“You’ll be in the hospital about a week,” the neurologist said as he completed the orders for my admission to neuro ICU.

An entire week? My mind was reeling. It was February 2015, and I had appointments on my calendar, meetings to attend and people to manage in the growing agency my wife and I owned and operated. An unexpected week away from work just wouldn’t work for me.

Little did I know that my inability to swallow was the beginning of a myasthenic crisis that would threaten my life, realign our world and keep me hospitalized for nearly seven weeks.

Myasthenia gravis is a wily disease. For some, it’s limited to the occasional droopy eyelid. For others, it leaves them immobile with the possibility of a major health crisis ever looming.

For me, slight chewing problems were the first signals there was a problem. That was the fall of 2013, and for the next year I saw several doctors as symptoms worsened and went through numerous tests before the diagnosis came. Even then, it was a surprise to the neurologist who’d said “we’ll do some blood work to check for MG, but I’m fairly certain what you’re dealing with is stress.”

After the diagnosis, I again took time away from work to meet with the neurologist to discuss treatment options. He prescribed some medications. What he did next is an image forever etched in my mind. Forming a claw with his right hand, he placed his fingers on my chest and said, “At some point that thymus gland has to come out.”

I knew what had to be done to get to that gland, so I wasn’t excited about enduring such an invasive procedure. Plus, with the odds being “50% of patients who have a thymectomy go into remission in three to five years,” I didn’t think the risk was worth the impact surgery would have on me and my work schedule.

My mind was made up. No thymectomy. Then my primary care doctor read over the results of a CT scan while I babbled on about not wanting to have the surgery unless of course there was a tumor, a thymoma. “You do have a thymoma,” he said looking up. And that marked the beginning of a new chapter.

My wife and I talked about the options, knowing that in most cases thymomas are benign (as mine turned out to be). But I hadn’t been on the right side of the odds so far with this journey, so we decided not to take any chances. We assembled our team at work, discussed upcoming projects and scheduled surgery for early December. That would put recovery in the slower time of year for our business, creating minimal disruption.

But MG had other plans. In late January 2015, six weeks after a seemingly successful thymectomy, all my symptoms came back with a vengeance. In a matter of days I went from a slightly weak swallow to being completely unable to get medicine or anything else down. And that led me to the neurologist’s office where he admitted me for what he thought might be seven days.

The ensuing seven weeks found me in ICU most of the time, with the exception of a glimmer of hope when I was discharged to an inpatient rehab a few floors above me. We thought that was the beginning of my path toward home, only to be terribly discouraged when I lost my swallow again. Looking back, neither my wife nor I fully grasped how life-threatening my situation was. We did, however, realize that we simply didn’t know how this ordeal was going to play out. It was time to bring in some key people in our company for a conversation.

With them gathered around my hospital bed, we doled out assignments. Sure, folks had titles and areas of responsibility, but up to that point our operation was still very much Stephen and his support staff. We trusted these people, and now we would trust them with far more. We empowered them. We gave them direction. And we told them to run their areas of focus as if I wasn’t coming back to work.

After a few weeks, a member of the neurology team was successful in getting me transferred to a renown research hospital nearby. “We’ve done all we know to do for you here,” he said. “I believe they can help you.”

They did. The research hospital got me stabilized, installed a stomach tube and released me in late March. Most of 2014 was spent regaining my mobility, building up strength and learning to live with limitations. I increased my workload, and at times had to be reminded to pull back. But I had learned a valuable lesson in a dramatic way, and would never go back to micromanaging the entire operation.

The hardest thing I’d ever endured turned out to be the best thing for our business. With a solid organizational chart in place, we experienced significant growth. Within a few years we landed on the Inc. 5000 list of America’s fastest growing independently owned companies. In 2020 our agency was acquired by an organization on the opposite side of the country, giving us a presence and client base from coast to coast.

While there are many takeaways from our experience for small business owners, a few apply to any rare disease patient — or caregiver, for that matter — who is trying to maintain a job while managing a chronic condition.

1. When you must, you can. Before my crisis, I found it difficult to take off more than a few consecutive days for a vacation. There was just no way I could be away from work that long, I reasoned. Yet faced with no other option, I found a way. It wasn’t easy, but I had no other choice.
2. We all need a contingency plan. The chances are good that at some point in your life you will face an event that will disrupt your schedule and your income. Think through how you will handle this. Build up your savings account. Buy short-term disability insurance. Create a written plan for how your personal affairs should be managed.
3. There is joy in the journey. I’ve always relished starting a project, closing a loop and dreaming up the next big thing. By moving quickly from A to B, while already looking ahead to C and D, a person misses the joy that is found in the paths along the way. Life’s true richness — not to mention the lessons that make us stronger — is found in the journey we share with those walking beside us.

Stephen V. Smith is a writer and entrepreneur who makes his home among the mountains and creeks of his native Northeast Alabama. You can interact with him at stephenvsmith.com.