Learning to Face the Unknown: Life with Guillain-Barre Syndrome

Fear of the unknown is a feeling we’ve all faced at some point. I liken it to standing at the edge of a cliff with nothing but a fathomless crevasse in sight.

Tim Goliver and Luther Glenn, two men with two completely different lives, faced the same gaping-hole-of-an-unknown.

I’m talking about Guillain-Barre syndrome.

It’s a rare disorder that causes the body to attack itself. To be exact, the immune system attacks peripheral nerves. But no one really knows the exact cause, at least according to the National Institute of Neurological Disorders and Stroke.

The unknowns surrounding Gullain-Barre syndrome are many. And that’s evident in Tim and Luther’s stories.

NPR reported Tim was a college student on the cusp of graduation, a church-goer and self-described “literature geek.” Luther was middle-aged, a former U.S. military policeman with two adult daughters.

Both were diagnosed with Guillain-Barre syndrome not long after recovering from stomach bugs. Guillain-Barre often surfaces after a different illness or virus, the NPR story explained. But why, when, and in whom is unknown.

Both experienced paralysis. Tim couldn’t breathe without assistance. He couldn’t talk or eat. Luther couldn’t move. Often, he couldn’t blink, but he could breathe and talk.

Six years later, Luther’s in a wheelchair, and movement is still hard. It’s likely he won’t fully recover, like 20 percent of those diagnosed with Guillain-Barre Syndrome. Tim is in the other 80 percent. He’s nearing complete recovery.

Despite different outcomes, both faced the unknown with similar courage.

As Luther told NPR:

It doesn’t dishearten me, but I realize this just might be my plight, so I take a smile with me and let’s go. Make the best of it.

You can read more about Tim and Luther here. Find out more here about the knowns of Guillain-Barre Syndrome and how researchers are chipping away at the unknowns.