Columns The MS Wire - A Column by Ed Tobias Upon Reflection, I’m Determined to Seize the Day Upon Reflection, I’m Determined to Seize the Day by Ed Tobias | April 15, 2022 Share this article: Share article via email Copy article link Do you think about death? I do — a lot. I mean, like almost every day. Don’t get me wrong. I’m not suicidal, and I’m trying not to sound morbid. I love my my family, my friends, and my life. I’m not depressed. But I do think about what’s down that road around the next bend. Usually it’s just a brief “I wonder when?” moment. But sometimes it’s, “Will I leave suddenly or slowly? Will my body go first or will my mind gradually fade away?” It can’t be that unusual for a guy in his seventh decade to be thinking these thoughts, right? Especially a guy who has multiple sclerosis. The only question I remember asking my neurologist when he told me more than 41 years ago that I have MS is, “Will it shorten my lifespan?” His answer was that statistics showed I might live about seven years less than a healthy person. Recommended Reading March 15, 2022 by Bionews Staff 31 Days of MS: My Diagnosis Helped Me Find My Purpose Incredibly, that figure has barely budged since I was presented with it back in 1980. Despite all of the advances in treatment in the past four decades, the lifespan of a person with MS is still predicted to be about five to 10 years shorter than the general population. That statistic means a lot more to me today than it did when I was 32. That’s especially true considering a study, which hasn’t yet been peer-reviewed, that I recently read. Researchers at the University of Colorado, the Urban Institute in Washington, D.C., and the Virginia Commonwealth University estimate that due to the COVID-19 pandemic, the average life expectancy in the U.S. dropped by nearly 2.26 years between 2019 and 2021, to 76.6. That’s some stick in the eye when you have MS and turn 74 in a few months! My response What’s a guy to do? I can say “Woe is me!” or I can follow the advice of the poet Horace, who wrote “carpe diem” in 23 B.C., meaning, “seize the day.” I’ve always tried to do that while living with MS. I follow the words of motivational speaker Vivian Greene, who wrote, “Life isn’t about waiting for the storm to pass … It’s about learning to dance in the rain.” As I wrote in a column three years ago, “I live with my MS as best I can. I don’t ‘battle’ it. I live with it. I go with the flow.” So my wife and I are about to head out on a short vacation with our kids and grandkids. And I’ll probably do some dancing in the rain. Carpe diem. You’re invited to dance on over and investigate my personal blog at www.themswire.com. 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, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun. Tags COVID-19, diagnosis, perspective, prognosis Comments Leanne Same. Glad I'm not the only one. The pandemic has cramped my style and then lack of mobilty.. Reply Ed Tobias Always good to hear from you, Leanne. Thanks for the note. Ed Reply Ian R The figures relating to MS lifespans are far from clear cut. My neuro did a study c.10 years ago that showed that the average life expectancy for an MSer after diagnosis was 30 years. I think this sounds broadly right. I don’t know any MSers in their 80s… a few in their 70s. My aunt died of MS in her mid 50s. J K Rowling’s (Harry Potter) mother died in her mid 40s. Michele Obama’s father died of MS at 57. Most deaths occur as a result of infections / pneumonia etc. End stage MS can be pretty grim. I think the variation can be wide in terms of life expectancy. Keeping a healthy diet, exercising as much as we can, and dealing with co-morbidities eg diabetes, high blood pressure are probably the best we can do at getting a relatively healthy longish life. Reply Ed Tobias Hi Ian, Thanks for the info. I'm surprised at the study showing 30 years post-diagnosis, especially since there are more, and more effective, DMTs available than ever. The same for the ability to deal with co-morbidities. I wonder if your neuro is still using that 30 year number. Ed Reply Kim Ahmed Couldn’t agree with you more,Ed. I enjoy your views & attitude, I myself having been diagnosed in 2003 & doing well with the exception of a left leg that won’t listen to me. Have to get over being angry at my body for not doing what I want & getting so fatigued! I try to put that anger to use to drive me to keep going! ???? Reply Ed Tobias Hi Kim, Thanks for your comments and I'm glad you like what I write. I'm also a left leg dragger, BTW. I've written a couple of column about the Bioness L300 that I used to help with my foot drop. I'm glad you're doing well and hope you'll keep pushing. Ed Reply Kathleen Ed: Your question I know is something every one of us human beings is haunted by (or should be if we are honest) as you so genuinely and perfectly articulate. Having MS brings us in a strange way the opportunity to consider our lives in a deeper way, even as you, with an enormity of experience and witness to life through the eyes of a journalist has more questions. May I offer at this time, as so many human beings are honoring their traditions, that you take a considered look at Jesus who is honored today and who claimed to be the Savior of the world and was scoffed at, as He remains so today, but took the untold number of ways we miss the mark in the eyes of a Holy God our creator, and was crucified to satisfy the wrath of God in our place, was ressurected, and offers us everlasting life if we believe in Him. John 3:16 in the Holy Bible. It is incomprehensible to us and yet through the grace of God is something where our deepest yearnings are met. I expect as you continue your earnest search to quiet the angst of our shared ultimate mortality you explore the claims of Jesus Christ and seek Him who offers new life here now and forever. Thank you for sharing your words and being patient and thoughtful with mine. It seemed unforgivable and remiss for me not to respond, particularly today Easter Friday, to your post that I just read ... synchronicity perhaps? Sincerely and with humility, and with thankfulness for your writing and heart that you share with those of us who are living with MS. Reply Ed Tobias Hi Kathleen, I'm glad you liked the column and thank you for your kind words. Interestingly, when I wrote it it didn't occur to me that Good Friday and Easter were just a few days away. Was my subject a coincidence? Perhaps...perhaps not. I will be, as you wrote, "thoughtful" with your words. I appreciate your sharing them with me. Ed Reply Jeffrey M Gullang Awesome post Ed. Sieze the day and enjoy your vacation. Be safe with pandemic. Reply Ed Tobias Thanks, Jeffrey. My wife and I can't wait to see our son and his wife and, especially, our two grand kids. Ed Reply Jen Severn Ed, thanks for this. I think about death daily too, but that's different from being suicidal. And when you say "I live with my MS as best I can. I don’t ‘battle’ it", it makes me think of that common expression, that someone died after "a long battle with cancer". I always think, "How exhausting! No wonder they died." Reply Ed Tobias Hi Jen, Thanks for your note (from down under, I assume). Yes, if I was battling all the time I'd have even less energy than I have. No fight here. Ed 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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