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

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

“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.

Join the MS forums: an online community especially for patients with MS.

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.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


  1. Victor Wendl says:

    Your article stimulated the question shown below:

    For those diagnosed with cancer we currently have in place a “Right-to-Try” law enabling those to try a new treatment that has successfully passed the Phase I clinical trial hurdle by the Food and Drug Administration (FDA).

    Unfortunately, this is not true for MS treatments that have passed the rigorous safety trial of a Phase I clinical trial and are currently undergoing a Phase II or Phase III work-in-progress. Is there any group within the National MS Society trying to modify this “Right-to-Try” law to include MS.

    • Jamie Hughes says:

      Victor, I’m unsure about that. However, there are experts on this site who can give you that information. Check through the news page as well as several of the columnists’ pages who cover medical news. They might have the answer you’re looking for!

    • Kevin Keplinger says:

      Hi Victor,
      In my opinion the NMSS & the other MS Society’s are useless!! All they do is go on walks, bike rids & throw themselves lavish self awards dinners!!!! Those of us in the HSCT have begged them to support HSCT, but even with all the good results for MS patients coming from HSCT, the MS Society’s will barely mention it!! Probably 95% of their members & all MS patients have never even heard of it!!! Their actions in regards to HSCT are outrageous in my opinion!! HSCT could be helping so many people. We need HSCT & we need it now!!!!

  2. Pauline Phelps says:

    Reading your column reminds me of my daughter encouraging me to buy a mobility scooter so that I will be able to leave the house! She says it’s my life and I deserve to live more rather than always within these four walls.

    • Jamie Hughes says:

      Pauline, your daughter sounds like a very wise woman. (Probably because she was raised by you!) Little steps, but yes…take that first one. Be brave and seize the day!

  3. joann kaplan says:

    Thank you for the wonderful column you write. As difficult as it seems to get ourselves moving, it’s imperative that we step out of our comfort zones. Keep up the great work you do. You make a difference.

    • Jamie Hughes says:

      Thank you, thank you, thank you, Joann. It really helps me to know my column is doing some good in the world. May God richly bless you as you seek to keep on living life!

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