Columns A Life in Letters – a Column by Jamie Hughes I Want to Be Alive, Rather Than Just ‘Not Dead’ I Want to Be Alive, Rather Than Just ‘Not Dead’ by Jamie Hughes | February 8, 2019 Share this article: Share article via email Copy article link “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. Print This Page About the Author Jamie Hughes Jamie A. Hughes is a writer-editor living in Atlanta, Georgia, with her husband, two sons, and a trio of very needy cats. She was diagnosed with relapsing-remitting MS in 2004 when she was just 25 years old. A lover of words since birth, she wasn’t about to let two little letters get her down. They don’t get the last word. And that’s why she writes her column — to help those dealing with MS to live more thoughtful, hopeful, and inspired lives. Comments Daniel Taylor Wow, Inspiring words. thank you. Reply Jamie Hughes Thanks, Daniel! Keep on keeping on, my brother. Reply Victor Wendl 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. Reply Jamie Hughes 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! Reply Kevin Keplinger 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!!!! Reply Pauline Phelps 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. Reply Jamie Hughes 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! Reply Rosie Really wise words and thoughts. ..thank you for the inspiration you offer! Reply Jamie Hughes Awwww! Thanks, Rosie. I sure do appreciate hearing from you! Reply Rashmi Jose Thank you...Its so inspiring.... Reply Jamie Hughes My pleasure, Rashmi. Glad something resonated with you. Reply joann kaplan 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. Reply Jamie Hughes 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! Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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