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With MS, I Want to Be Alive, Rather Than Just ‘Not Dead’

Columnist Jamie Hughes writes that she wants to live every moment fully, as she believes that real living happens outside of our comfort zones.

“I’m alive,” said Shadow. “I’m not dead. Remember?”

“You’re not dead,” Laura said. “But I’m not sure you’re alive, either. Not really.”

This snippet of a longer conversation in Neil Gaiman’s “American Gods” is a strange and wonderful moment in the book — and not only because Laura is a walking, talking corpse. It’s a turning point for Shadow, the novel’s protagonist, after which he begins to think and act differently. He chooses to be “alive” rather than just “not dead.”

Reading this book, which I highly recommend by the way, got me thinking about belief, loyalty, sacrifice, death, and life. And how and why we endure life’s hardships. Multiple sclerosis (MS) makes everyday tasks seem impossible and turns molehills into mountains for some of us. We have days when it’s easier to sit at the base rather than attempt the climb.

But giving up isn’t very satisfying. Finishing comes with celebratory parties: blue ribbons, medals, and buttons that say “I DID IT!” in big bold letters. Giving up or “doing your best”? Not so much.

But praise or parties don’t drive me. I hate giving up on anything, whether it’s a project, person, book, or goal. I want to get to the end. To look back at the struggle and feel the joy of knowing that despite the difficulties, I got through it. It gives me courage and faith that I can and will do it again, even when MS makes it hard.

I don’t want to be just “not dead.” I have no desire to breathe, eat, and sleep for no greater purpose. I want to be “alive” in every sense of the word. I want to be wherever I am, experiencing each moment. I want to, as Henry David Thoreau wrote in “Walden,” “live deliberately, to front only the essential facts of life” and “rout all that [is] not life.” And sometimes that requires me to display a level of courage I don’t feel, take on a task I’d rather avoid, or attempt something that scares me.

I’m no daredevil. I’m more of a moss-gatherer than a rolling stone, a big fan of peace and tranquility. However, it can be easy to lose focus when comfort is your supreme reason for being. That’s how you slip from being “alive” into being merely “not dead” without even noticing it. And MS makes it even easier to lie down, to relinquish a goal or a journey because it seems too hard to try. That tendency has to be deliberately guarded against because while real life happens in the safe places that bring us joy, it also occurs outside the well-defined borders of our comfort zones.

Read on: With MS, I Want to Be Alive, Rather Than Just 'Not Dead'

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