A different perspective can help us make the most of delays, setbacks

Columnist Jamie Hughes explains how MS makes time feel relative

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by Jamie Hughes |

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As hard as it is to believe, another school year is drawing to a close. It still somehow takes me by surprise every time. It feels like just yesterday that I was buying new shoes and helping my eldest navigate the halls of high school for the first time, and now here I am, going to spring concerts and prodding both kids to study for finals.

When we adopted them, someone told me to treasure each moment because “the days are long, but the years are short.” I thought it cliché when I heard it, a cutesy piece of information seasoned parents pass down to the new ones, but I’ll be damned if it isn’t true.

When dealing with two teenagers, “Time can draw out like a blade,” as the character Red puts it in “The Shawshank Redemption.” But when I look at my youngest, now 13, I wonder what happened to the little 5-year-old boy who used to run wild through the house like his hair was on fire.

Multiple sclerosis (MS) also has a way of making time feel relative. There are days that feel impossibly long, thanks to symptoms or other trials that crop up unexpectedly, and the good times, whether they come in hourslong sips or weekslong gulps, often feel far too short for my liking. But regardless of what I think, the clock always ticks steadily along, second after second, until 24 hours have passed and another day is done. It’s not time that changes; my perspective alters it, if only in my own mind.

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It’s not uncommon, this strange relationship to time. According to a research article published in 2018 in Frontiers in Psychology:

“It can be said that what time is like depends on how we think about it. And the way we think about time is related to our personality, life experience, and upbringing. … The significance of attitudes toward time is very accurately captured by the popular expression ‘silent language,’ … the attitude toward time in a given culture.”

Researchers go on to explain that some cultures are organized around “clock time” (where things are divided by minutes and hours, and tasks must begin and end at certain moments) and “event time” (where events begin only when another one ends, and the actual time is irrelevant). Western cultures, like the one in which I find myself, are largely based on clock time, but MS certainly has a way of making it hard to keep to such a schedule.

There are days when I end up dwelling in event-based time. The goal may be to get to work by 8 a.m., but if my body isn’t cooperating, getting to work is the event that happens after I get up, get ready, and make my commute. That might happen at 8, but it could just as easily happen at 9 or even 11. Hours don’t matter when my beautiful yet broken body is calling the shots.

I think multiple sclerosis has created a “culture” of sorts, and I’m a member of it. And if you’re reading this, it’s likely that you (or someone you love) are, too. And our culture must exist in both kinds of time — striving for a balance between them as we live out our days and do our best to be kind to ourselves.

There is a choice to make in this tension. We can either be irritated by it or embrace it for what it is. We must always remember that life — even with an often-frustrating incurable disease — is still well worth living. We just have to choose to look at it the right way.

Henry David Thoreau (whom I’ve mentioned more than once in my columns) wrote, “It’s not what you look at that matters, it’s what you see.” We can look at something, especially the delays and setbacks MS causes, and only see the negative. But if we choose to view our challenges — those things that prevent us from keeping perfect clock time like those around us — in a positive light, we just might find a different (and perhaps better) way to live out our days.

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.


John McCann avatar

John McCann

Thanks Jamie. Just what I needed to improve my day. Your timing (pun intended) is perfect. Was feeling a little low and read this.

Jamie Hughes avatar

Jamie Hughes

John, I am so so glad to have provided what you needed. That's the EXACT reason I keep writing this column. Be well, friend. Peace to you on the journey.


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