What Are You Living For?

What Are You Living For?

Maybe it’s because I’ve been listening to too much Jackson Browne lately, but I’m distressed by the state of the world these days. And it’s not the big-ticket stuff like politics or social dysfunction that’s got me worried, either (though both take turns keeping me up nights).

It’s the hashtags.

Every morning, I open a browser window and mosey on over to Twitter to see what’s trending. Usually, I’m greeted by another inane hashtag. It’s always something like #NationalHotDogDay or #NationalMacAndCheeseDay or #NationalTequilaDay, and thousands of people are chattering away about the object du jour. It’s usually food- or drink-related, and in addition to posting funny memes, gifs, or artistically arranged photos of said object, people prattle away about the thing like it matters.

Trust me, as an MS patient, I get it. Life is hard, and it’s tempting to check out from time to time. But too many of us are clinging to a dopamine-drenched, instant gratification kind of existence. People are searching for something to make them furiously happy at all times — something to distract them from pain or discomfort. I see it in the people around me. I see it in my own kids. Celebrating National Taco Day or National Coloring Book Day is innocent enough on its face, but needing something like that to get through a run-of-the-mill Tuesday? Yikes.

It bothers me because I’ve seen something like it in a work of fiction. (A genre that tells a lot more truth than one might expect.)

In Aldous Huxley’s masterpiece “Brave New World,” the population is constantly popping Soma, a narcotic provided by the government, to escape pain and avoid feeling real emotions. It “raise[s] a quite impenetrable wall between the actual universe and their minds.” When they have “dreadful ideas,” Soma helps them forget and instead be “So jolly.” When stressed, everyone recites the mantra, “Do remember that a gramme is better than a damn,” and sends another little white pill (or three) down the hatch.

Literally, the entire world “can’t even” in Huxley’s novel. So, they subsist (rather than live) in a sort of fog, pushing away what’s unpleasant, until their tolerance for such things is nonexistent.

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Living with multiple sclerosis for 15 years has taught me a great deal, but perhaps the most important lesson is the importance of remaining fully present in one’s life. That’s why wherever I am and whatever I’m doing — whether it’s fun and pleasurable or damned unpleasant — I’m “real in.” Reading a book at the beach, drink in hand? I’m there. Waiting for the MRI results? I’m there, too. And no, I’m no masochist enamored with suffering. Both moments matter, and I can’t fully experience one without the other.

Today is National Scotch Day and National Crème Brûlée Day and, weirdly enough, National Talk in an Elevator Day. I’m all for enjoying those things (especially the Scotch), but if a pursuit of them becomes my reason for living, it’s time to check the plumb line.

Thanks to MS, I’ve learned the secret to living well is not to run away from challenges. Rather, we must lean into distress, embrace it, and accept what it has to offer. That’s where courage comes from. It’s where kindness is developed and empathy forged. It’s through hurt and joy (and everything in between) that we become truly human.


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. Zenda Trim says:

    Oh finally i know what a HASHTAG is lol. I am 67 years old. I used to teach I.T. in the community and was on the world wide web from the get go. I feel sorry for the younger generation to be honest.

    They have all turned into lemmings. Never thinking for themselves, someone posts something diabolic on facebook and they get enraged and follow blindly and mostly these are just junk, or pranks. They never question anything. To question is to use the brain to challenge themselves. There are no challenges in their lives so they are bored hence they follow inane rubbish on Twitter.

    We as a society and governments have taken their need for thought away from them. My granddaughter didn’t even know what a TITLE was when filling in a form for work.

    My friend who is 48 spends her time with husband and their friends having game nights or following some little virtual bit of script called Pokemon. Their days are work, then home mechanically and play or follow facebook or twitter.

    My day is full of challenges. How do i get through a day when i actually dared to go out the day before. My challenge is dealing with the pain and the fatigue. Constantly striving to find ways to cope with my life. So far 18 years and in between i have had a ton of emotions to deal with. Emotions are what make us humans, otherwise we might as well be all little lemmings following each other over the cliff. We are emotional we need emotions its how we love, hate, get angry, survive. As soon as we are born we have emotions, looking up at our mothers and mothers looking down at us, and even though we are not aware of it, in our tiny new brain we will have felt something…probably safety.

    Nah hashtags are ridiculous just an escapism for their boredom. Perhaps its my age group, we were taught so many skills and I can still draw on them.

    I dont mind having MS to be honest its part of who I am, i am proud to be an MSER, and certainly glad I am not part of the hashtag race.

    Its National who gives a damn about hashtag day ha ha. xxxxx (Love your writing its so inspiring).

    • Jamie Hughes says:

      Thank you so much, Zenda. (And what a freaking cool name that is!!!!) When I write these pieces, encouragement is at the top of my list (along with honesty and humor). I’m glad to know this hit the sweet spot for you. Here’s to a no hashtag lifestyle!

    • Jamie Hughes says:

      Thank YOU, Matt. Glad I could be a shot in the arm for you today. Thanks so much for letting me know it was helpful.

  2. Christine Bonner says:

    I heard a good thing today while driving in to work. An author suggested: It is possible to be struggling and to still be strong. I am struggling these days (after a very recent MS diagnosis) but I am also trying very hard to be strong to understand what’s happening and to progress what I need to do to get where I need to get. Your words, ‘Rather, we must lean into distress, embrace it, and accept what it has to offer. That’s where courage comes from.’ is where I’m at. Thank you for a good start to the morning.

    • Jamie Hughes says:

      Christine, I cannot tell you how much I am moved by this comment. The first year or so after your diagnosis can be tough as you get used to the “new normal,” but I promise you that you will get through it. You’ll find the way forward, and life will be different. But that doesn’t mean it’s any less rich or wonderful. Keep leaning in. As Aslan told Lucy in “Voyage of the Dawn Treader,” — “Courage, dear heart.”

      Yes, we’re all together in this. Struggling and strong!

  3. Rick Ippolito says:

    Jamie, this is a fabulous post you wrote. My sentiments exactly! You are a wise young woman! I hope you don’t mind I reposted this on my FB page.
    Warm regards,

  4. Allan Miller says:

    A great article! I’ve forwarded it to my MS Buddies and other friends.

    We need these reminders to live in the real world in the present moment.



  5. Jacqueline Elizondo says:

    Thank you Jaime for an inspirational and jovial article. Keep up the good work and God bless you.

    • Jamie Hughes says:

      Thank you for your kind words, Jacqueline! I don’t know that anyone has ever referred to me as “jovial” before, and I rather like it. 🙂

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