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Background Life with multiple sclerosis

Ball Bearings

Not my hand Image from monkeyknuts.com

Before Special Forces, I was an FO (Forward Observer) in one of the Ranger Battalions. One of our primary missions was seizing airfields and since we lived on one, we had the opportunity to practice a lot. One particular evening, I exited the plane, said a prayer of thanks when my parachute opened (first jump….100th jump…I was always grateful), and prepared to land. It was not one of my better landings. My rucksack, at the end of its 15 foot lowering line, smacked into the concrete runway…..no, really…several other Rangers heard it “smack” and I smacked into the grass on the edge of the tarmac. I was fine, but when I collected my kit, a nice new piece of gear, in my ruck, that I had the “honor” of jumping in, had not survived the landing.

The next day the Company 1st Sergeant called me into his office and when I turned from closing the door behind me, I saw the broken piece of equipment sitting on his desk. He was known to smile on occasion, but this wasn’t one of those occasions.

A week earlier, he had dismissed that particular item as just another piece of FO nonsense, but as he shouted the name, manufacturer, and exact cost at me, I knew that he held it in higher regard than he had let on.

When he paused, I let him know that although I was a little sore, I was unhurt. He stared at me in silence, but his slightly opened mouth and the twitch below his left eye betrayed the fact that he was secretly glad I was ok. He even summoned my immediate supervisor and had him take me outside for an hour or so of vigorous exercise just to make sure. As the two of us left to assess my range of motion, the 1st Sergeant’s parting words to me were a resigned, almost awestruck, “If I gave you two ball bearings and told you to cross the street, you’d break one and lose the other.”.

Multiple sclerosis can be like that.

Ha! You were probably wondering how I was going to transition from rambling, boring story to something pertinent about MS.

Abruptly, apparently.

MS really is like that, in that many of its symptoms don’t seem to have a good option. Just a bad one, or a different, maybe equally bad one. Broken (dysfunctional), or lost.

Due to the effects of progressive multiple sclerosis, I have no use of my legs. Before I had my intrathecal baclofen pump implanted, spacticity kept my legs stiff, or sometimes spasming from hyperreflexivity. When they were stiff, I could pull myself to a standing position and spin slowly around into my wheelchair, like a clown tottering on stilts. Even if we call that “functional”, the spacticity was uncomfortable, to say the least, and really affected my sleep.

Once the pump was installed and the spacticity was controlled, my legs were limp. Comfortable, but even less useful. Sleeping through the night is nice and we are still adjusting the baclofen dose for maximum comfort with maximum function, but right now my legs are merely decorative.

So, dysfunctional, or lost? I chose lost, but I’d rather have functional. There wasn’t a third ball bearing. Break one and (or) lose the other, remember?

My abdomen was also affected by spacticity and now, by the baclofen pump. Unpredictable bowel and bladder function because core muscles are constantly clenched, or unpredictable function because everything is relaxed? I truly am better off relaxed; it’s the better choice of two bad ones, but it still isn’t the one I’d prefer.

When I could walk, I used a nerve/muscle stimulating device to counteract my foot drop. It did lift my foot, but it did it via electric stimulation, ie a shock. Plus, people would see the cuff on my leg and occassionaly assume I was under house arrest. (I guess I look like I should be….. at a minimum)

MS has choices…..just no good choices. Those are just a few examples. We, unfortunately, can’t choose to not have it. We’re just given our ball bearings and told to cross the street.

Categories
Life with multiple sclerosis

I Understand

Image from https://www.whats-thesayinganswers.com/i-understand/

I have never been shot.

I realize that if I didn’t have the background I do, that would be a very odd statement. As the team medic, I saw plenty of gunshot wounds and packed/bandaged a few, but thankfully, never had one of my own. I would venture a guess that between seeing, treating, or just talking with people who have been shot, I have a pretty good awareness of the experience. However, I don’t…….. I can’t really, understand it, because it’s not my experience.

When people find out that you have multiple sclerosis, many feel like they should say something and usually, they mean well. Certain things grate on me depending on their delivery, timing, my mood, etc and there will be plenty of posts on this blog covering them in detail. Today, I want to cover, “I understand”.

People say, “I understand, what you’re going through……how you feel……what it’s like…”, and so on and 99% of them probably mean well. There is that 1% that doesn’t, but they’re easy to distinguish because they usually follow it with something along the lines of, “If it was me, I’d do……”, or, “What you ought to do/try is……”. The implication being that whatever you’re doing now isn’t good enough. We’ll cover those people another time.

For the 99% that mean well, I’m genuinely grateful….. 99% of the time. Sorry, I’m not perfect. No, no, I can be honest. If you catch me at the wrong time, on the wrong day, etc, my mood may vary, but most of the time, I know what you mean when you say, “I understand”, and I’m grateful.

Thank you, from the bottom of my itty bitty, grinch heart, thank you. I know, you’re trying to understand; you want to understand and that means a lot, it really does. Here’s the thing. You can’t understand. I don’t even want you to understand (I spent a long time thinking I did), because that would mean you were just like me and I don’t want that for you. What I do want is for you to understand……that you don’t undertand and that that’s a good thing.

Don’t try to understand, but do try to be aware. Being aware is so much more than just knowing something exists. I say that because I once thought that was all it meant. Sure, I want you to know it exists, but I want you to be aware of what it does, why I cancelled plans at the last minute, why I keep dropping my fork at dinner, why a full day in the sun at the beach doesn’t sound exciting to me, and why I’m so different than your cousin’s, friend’s, uncle, who also has MS.

That last part is so important. I’ve mentioned before that I’m only part of one MS forum, the Kurmudgeon’s Korner. I think that one of the reasons it is a good fit for me, is that even though we all have MS, are very, very, aware, and can empathize with each other, we don’t presume to understand everyone’s unique experience with their unique disease process.

Maybe, “get”, as in,”You have to get MS to ‘get’ MS”, doesn’t mean understand completely. I have it and I don’t fully understand it. No one does and no, I don’t think that’s too bold of me to say. The best of my family and friends don’t understand, know they don’t understand, don’t try to understand, but are keenly aware of my limitations and the predictably unpredictable nature of the disease and inexplicably want to hang around me anyway.

As with everything I write, this is all just my opinion and as much as I’m loathe to admit it, I don’t know everything.