Columns

Facing the Uncertainty That Comes With Having a Rare Disease

I think most people struggle to thrive in uncertain times. I know that in my case, uncertainty makes me anxious and often impatient. When faced with uncertainty, what normally would be a small annoyance becomes larger than life itself. The Lambert-Eaton myasthenic syndrome (LEMS) community has had its…

Embracing Our Differences Within the LEMS Community

When I started home-schooling my two youngest children, I was desperate for someone to give me a formula of what our school day should look like. What did I need to cover each day?  How much time should I spend on math? Reading? Should I be doing science experiments? A…

Putting Out the Fires That Flare Up Because of LEMS

Ebbs and flows seem to come with a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). I’ve equated that diagnosis stage to putting out a fire. Everything else in life seems to halt so that the fire can be put out. Finally, the fire is smothered as a diagnosis is…

Steps I Took to Dig Out From the Depths of Depression

Watching a loved one suffer is unbelievably hard. Watching your child suffer and lose function is practically impossible. In my view, suffering and heartache were never meant to be part of our story. Yet here we are. Each of us has extremely hard parts in our stories. In my life,…

How We Managed a Vacation, LEMS, and Summer Heat

These last days of summer blanket us with a thick layer of humidity and unrelenting sun. For us in the South, the end of summer is not marked by the turning of the seasons toward cooler weather, but instead the return of the new school year. The heat and humidity…