Understanding multiple sclerosis’ ‘demotivational’ flash points

I’ve warned you in previous columns that you might have to endure a rambling story or two from my military past. It’s just that there are so many lessons from the experience that pertain to my multiple sclerosis (MS).

It was supposed to rain later that evening, so we wouldn’t be parachuting into the training exercise. “Don’t worry,” the platoon sergeant told us, “we’ll get trucks to drive us to the drop zone, and we’ll start the patrol as if we’d jumped in. The planes could probably beat the weather in, but the parachutes might get wet waiting to be picked up, and nobody wants that.”

It occurred to me — and not for the first or last time — that I didn’t particularly want to get wet, either, but nobody else seemed to care. Some people just aren’t sympathetic to perfectly reasonable complaints, and I seemed to be surrounded by them.

Recommended Reading

March 30, 2023 Columns by Benjamin Hofmeister

There’s no point in playing the blame game after the disease is diagnosed

Sure enough, it started raining about an hour into the exercise. At a halt, I turned to the squad leader, who’d taken a knee near me and looked like he needed cheering up. I leaned in closer and cheerfully whispered one of his own motivational refrains: “If it ain’t raining, we ain’t training!”

He stared at me for a few seconds, and although it was dark, I could see his eyes narrowing behind his night vision goggles. I don’t recall what his exact reply was, other than it included a couple of crude anatomical terms and called into question the legitimacy of my birth and my worth as a human being. The rain had obviously found his “demotivation” point.

What is a ‘demotivation’ point?

For young U.S. Army Rangers in general, a common demotivation spot is an area at the base of the spine about the size of a quarter. When the first drop of cold water rolls down between the shoulder blades and hits that spot, soldiers know they’re truly wet.

As we continued walking in the downpour, I occasionally heard a quiet gasp, followed by a whimper, as someone’s spirits were dampened (pun absolutely intended). Almost three decades later, I wonder what the demotivation spot for multiple sclerosis is. Rather, I should say spots. If you’re like me, you probably have more than one, and they likely vary.

I’m not referring to the point of giving up. I mean those spots that, when figuratively soaked, take your motivation away. One thing about my primary progressive multiple sclerosis is that it’s consistently inconsistent. Each MS experience is different. What demotivates me may not demotivate you. What bruised my spirits yesterday may not today.

It always seems to be the little things that bother me. I can’t walk, drive a car, or shower independently, but dropping my fork three times while trying to stab an elusive last bite is what breaks me. Also: not having the hand strength or dexterity to push the button on my electric toothbrush; eye fatigue and double vision when I want to finish the last pages of a book; fumbling fingers that refuse to turn the pages.

These are a few of my demotivating spots from the past week, and I have no doubt that next week’s will be different. Like a drop of water hitting the last dry spot on the small of my back all those years ago, these things make me feel completely soaked and miserable.

MS makes even the smallest things seem big. And I believe that a lot of the demotivation I’ve described comes from thinking these things are too small to affect us. Hint: They’re not.

What are some of your triggers and solutions? Feel free to share in the comments below. It’ll be like passing around a warm, dry towel.

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.