Month: November 2021

Categories
Life with multiple sclerosis

MS Ego

© Stocklib / prazis

A couple posts ago I mentioned that, I had taught a little in the past, had learned a lot from teaching (mostly how much I didn’t know), and introduced you to the 33% rule. This week, I will try (in my clumsy, rambling way) to pass on another important lesson that I picked up as an instructor of elite soldiers; dealing with egos. That’s egos with an “s”, not just because there was more than one student, but because I have one to manage as well.

There are probably entire volumes devoted to ego, pride, arrogance, dignity, etc, the similarities and differences between them, and the fine line(s) that separate one from another. I won’t get into all that here since I doubt I understand it all myself and my opinions on the matter are exactly that. I will opine that there is a difference between being justifiably proud of an accomplishment and being egotistical. In my opinion, pride can be questioned, (I know what I know, but I don’t know everything and can always learn something new), while ego can’t.

The acronyms, (yes, I know the difference between an acronym and an abbreviation), for all the courses I helped teach began with the letter “S”, which stood for “Special”……..(there’s a crude joke there somewhere, but I’m going to be the bigger person). Special, or elite people tend to have pride in their accomplishments, but sometimes even the most justifiable pride, and/or self confidence can drift into ego territory.

Early on in my days as an instructor I went to the same senior instructor who introduced me to the 33% rule to ask his advice on how to convince a student that he wasn’t doing something the “right” way. He observed the student for a moment and then commented to me, “That guy is both fast and accurate, which is the end goal here. Is the way he reaches that goal unsafe, or is it just not the way you do it?”.

On the opposite side of the coin, I’d sometimes get a student who was putting rounds everywhere on the target except the middle and I’d make what I thought was a helpful suggestion, only to be met with, “I know what I’m doing! I’ve been shooting this way for longer than you’ve been in the Army!”.

This is where you want to say something like, “Well, it looks like you’ve been doing it wrong all those years, because you suck.”, but you don’t. Instead, you get another instructor to drop the same casual hint that you just did, but maybe in a different way, or you just say something along the lines of, “Chuck Norris does it like this.”.

This is the part of the post where I switch gears back to multiple sclerosis. I really do try to make it a smooth transition, but it’s hard sometimes and probably looks like I’m shifting without a clutch. In this post, what I’m trying to transition to is that while I wouldn’t lump it into the elite category (rare, sure, but not elite) it’s very possible to have an MS ego too……I know I do.

You’d think I’d know better, but apparently I don’t. I’ve known I had MS since 2014, but in that short time, I still sometimes think that the way I do things is the only way and I’m not open to alternate suggestions. For example, I’ve only been transferring myself from wheelchair to recliner, to car seat, and so on, for 10, or so months. There is only the slimmest of possibilities that I have the technique mastered, but I’ll be the first to say that this is the way I’ve always done it.

My ability changes by the hour, day, temperature, my temperment, etc, and it is never the same as someone else’s, so I can neither demand that someone do things my way, nor think that their way is going to work for me. I do tend to give more weight to the advice of other people with MS, but I have learned that if anyone insists that their way is the only way, then they’re probably selling something.

Sticking with the teaching theme; on the opposite side, our “instructors”, i.e. loved ones, caregivers, therapists, healthcare providers, etc, also have to recognize that we can both have MS egos. Is what I’m doing wrong because it’s unsafe, or because it’s not the way you’d do it? Sometimes, just having a different “instructor” tell you the same thing at a different time really does make a difference. I respect my neurologist because he never acts like he knows everything (he knows way more than I do) and he never pretends that MS is a one size fits all disease. I respect my physical therapists for the same reasons. And yes, my darling wife and caregiver I respect you too. I’m probably going to regret this, but there is a chance that you also know more than I do.

Oh, and to the lady at the grocery store who used to know someone with MS just like me and offered the unsolicted advice about “trying harder” and “mind over matter”. My “mind” is full of holes, so it does matter and in this case, I can safely say that no matter how long you’ve been doing it, your technique is wrong because you suck at it.

If you are looking for practical, realistic (but not always sunny and happy…because MS isn’t) talk about MS, join us over at Kurmudgeon’s Korner.

http://mskurmudgeonskorner.com/

It’s the greatest group you never wanted to join.

Categories
Background Life with multiple sclerosis

Two Sides

Image from defense.gov

A few years back…..(sigh)..ok, nearly two decades back, I was a student at the Special Forces medic course at Fort Bragg, North Carolina. As luck (well, my luck anyway) would have it, the field trauma portion took place during the winter months. In this section of the course, we were divided into small groups, and during each iteration, someone was the casualty, someone was the medic, someone was the medic’s helper and everyone else kind of stood around watching. You would stabilize the casualty at the scene then package and move him to a “field hospital”, where there was lots more equipment available and it was a whole ten degrees warmer than outside.

One fine day, there was a few inches of nice wet snow on the ground, with more falling. I was the medic and had treated my casualty under fire and moved him back to a covered position for more definitive care. I handed my helper a pair of shears and had him cut nearly all the casualty’s clothes off then rolled him onto a litter, covered him with a blanket (because I’m thoughtful like that), and continued to treat him in preparation for evac back to the tent.

When the first scoop of snow went down the back of my collar, it made me jump, but I figured it had fallen from a tree, so I ignored it and went on treating my patient, who was so into his role, he was even pretending to shiver. When the second scoop of snow started to slide down to the small of my back, I turned to see our instructor, holding a small shovel and glaring at me. He didn’t say anything, so I assumed he was just throwing a little added stress into the scenario and went back to work. In case you were wondering, a lump of snow sliding slowly down your spine to the top of your butt crack is a bit stressful. 

The third scoop of snow hit me in the back of the neck with such force that for a second I thought he’d thrown the shovel along with it. When I turned, he was right there. “You still don’t get it.”, he growled. He pointed at the other guys, including the casualty, “All of you, get to the tent and warm up. You!”, he poked me in the chest with the shovel, “take off everything but your boots”.

When I was standing there in the snow, wearing just my boots, he said, “You put your mostly naked patient on a mesh litter, three inches above the snow and only bothered to cover the top half of him with a blanket. If this was real, he’d have slipped into hypothermia and you’d have lost the fight before you even started. Now to help you remember, here’s what’s going to happen”.

It was a pretty good lesson. Almost twenty years later, I can distinctly remember running naked in the snow, weaving through the trees past each of the other small groups, shouting, “Two sides!! My patient has two sides”!!

 I may not have been known for my tender bedside manner, but none of my surviving patients can say that I ever let them get too cold.

The takeaway here, other than a cheap laugh at my humiliation, is that you and your multiple sclerosis have more than one side. You and your health care team (which you should be the head of, by the way) can’t neglect all your other sides to solely focus on MS. For example, I have high blood pressure and even though my MS making me more sedentary definitely contributes, I have to remember to look after that side of me. Likewise I can’t devote my complete focus to any one symptom, or aspect of my MS. Yes spacticity is my biggest and most annoying problem, but weak breathing muscles plus difficulty swallowing are sides of MS that shouldn’t be neglected.  

My patient is me and I have more than one side. You do too. I don’t suggest hiring someone to shovel snow down your back, but try not to forget it.

Categories
Life with multiple sclerosis

MSbidextrous

“Drawing Hands”, Litograph by M.C. Escher, 1948.

I am, by nature, right handed, or right hand dominant would be the better term, I guess, since I’ve almost always used both hands. At some point in my childhood, it occured to me that it was a bit odd for people to have one hand that did everything and one that just sort of hung around like an awkward kid waiting to get picked for a team.“Let’s see, we need another hand to balance out the body. We’ve already got one that writes, draws, throws, holds the silverware, swings a hammer, and so on. (Sigh) Come on over here kid. Welcome to the team, just stay over there out of the way and we’ll call you if we need a nail held or something”.

That’s not to imply that I ever used both hands equally; just that I made a conscious effort to employ my non-dominant one. For example, I never took the time to learn to write legibly with my left hand, (some would say I never did with my right one either), but I regularly ate, drank, opened doors, etc with it so as to keep it useful.

This came in handy (pun 100% intended) in the SFAUC instructor job I talked about last week. All the instructors had to know how to competently use their non-dominant hand because we regularly made students perform tasks with theirs. Should your dominant hand/arm be out of action, the time to figure out how to shoot, reload, put on a tourniquet, etc with your other one is not the moment when your life depends on it.

Since there were almost always a few left handed students in every class, all military weapons are made for right handers, and we were usually short on left handed instructors, I put some extra effort into learning to shoot (somewhat naturally and competently), left handed so that I could demonstrate for the lefties as well as the righties. I must have faked it pretty well, because a visiting instructor from another group pulled me aside one day and remarked, “You can shoot with either hand? I didn’t know you were amphibious.”.

Really, in the grand scheme of things, that wasn’t so bad. Over the years, I’ve been called ambiguous, ambivalent, and even androgenous by people impressed by the fact that I use my left hand for something other than a wedding ring holder, but the truth is, I am not ambidextrous.  

I would like to be. Multiple sclerosis hit my right side first and even though it eventually affected both sides, the right is definitely the most impaired. I am now MSbidextrous. Yes, I just made that up. No, I’m not going to try to copyright or trademark it. What I mean is….what I needed a new word for is MS forcing my non-dominant hand into a dominant role. Maybe dominant isn’t the right word. If my left hand wasn’t impaired at all and if I were truly ambidextrous, then “dominant” would fit the bill. Since neither of those is the case and instead, I’m forced by MS to primarily use the hand it impairs the least, I needed a more fitting word.

 The shoe’s on the other foot…….well actually, the glove’s on the other hand now. I’m mostly typing this left handed and having to make myself occasionally use what was once my dominant hand. I suppose I can’t really call it that anymore, but I guess I still think of myself as right handed even if MS has made me an awkward, unwilling lefty.                                                                               

Categories
Background Life with multiple sclerosis

The 33% Rule

I think I’ve mentioned before that I taught a little between trips overseas. Each Special Forces Group has a training detachment and I was assigned to my Group’s for a couple years, first as the detachment medic and later as an instructor for the various courses. If reality is the great humbler, then for me, anyway, teaching is a close second. This is probably because the most important thing I learned from being an instructor was how much I didn’t know. I learned a lot of other things by teaching, but the lesson I want to pass on to you today is what we called the 33% rule.

SFAUC was one of the courses I taught and one of the first blocks of instruction was a deliberate load process for both carbine and pistol. This is the slow and…….deliberate set of steps you’d take to not only ready your equipment, but check its functionality. When your life depends on it, is not the time to discover that something is loose, needs new batteries, etc. Even though it’s separate from the fast reload you’d do in the heat of the moment, all the motions are the same, giving you one last muscle memory rehearsal before showtime. 

I usually gave the safety brief first thing in the morning and since it was short and the deliberate load sequence was next, it was only natural that I continue straight to it. I would talk through the steps, giving a reason for each, because SF guys always seem to want to know why they’re doing something. Then I would demonstrate the process slowly, talking through each step again. Finally, I would demonstrate it at normal speed while just saying the steps. After that, we’d walk over to the firing line, the head instructor, over a PA system, would give the command to perform a deliberate load and begin calling out the steps, ……….and Every. Single. Student. Would. Do. Most. Of. It. Wrong.

The first time I observed this, I shook my head in utter confoundment and remarked to a more senior instructor, “I don’t understand. I just went over this five minutes ago. That guy did steps 1-3 right, but none of the rest, that one only got the last 3 right, and that one screwed up everything but the middle ”.

“Oh yeah”, he told me. “That’s the 33% rule. See, only 33% of the class is paying attention to you at any one time and it’s never the same 33% at the same time. Some only hear the first part, some only hear the last part and some only catch the middle ”.

“Wait, that’s only 99%”.

“Ah, yes, that 1% that’s left…….they weren’t listening to a word you said”.

Unbeknownst to me, training elite soldiers helped prepare me for a particularly frustrating part of MS; explaining it to others. No, my past experiences don’t help me explain it any better, but it’s some comfort to understand why a given person only absorbed 33% of my explanation. 

Come to think of it, it’s flattering, actually. I’ve only known I had MS since 2014 and I don’t begin to know or understand 100% of it. Throw in the individual variability of it; my MS is not the same as yours, as her’s…etc and it’s downright impressive that someone who asked, grasped even 33% of my rambling explanation. 

As for the remaining 1%, I’ve reached a point where I think I can gauge whether someone’s actually interested, or if they’re just conforming to the societal norm of saying something polite. I get why you feel that you should say something, or feel like it would be rude not to ask a question. Please understand though, if you ask a 1% question, you will get a 1% answer. 

“I’m fine”, “It’s fine”, “Oh, can’t complain”, etc, etc, etc

Categories
Life with multiple sclerosis

Over It

The crap gap……I’m over it…….the gap, I mean……because I just got my Ocrevus infusion. (Sigh) It’s not a very clever title, is it? Maybe there’s an MS lesion on the clever title comeupwither region of my cerebellum.

I had sort of planned to have a thrilling follow up to last week’s post, but Friday’s infusion, blood work, baclofen pump refill plus dosage increase, and flu shot was a smoother process than I could have imagined, or dared to hope for. There was about an hour Saturday evening when I thought to myself, “Mr. Hofmeister, (I’m very polite when I talk to myself), you might have overdone it.”, but I was wrong…..well, about what I’d overdone anyway. Looking back, that brief unwell feeling might have more to do with the amount of Halloween candy I stole from my children than from Friday’s events. Don’t misunderstand, it wasn’t guilt gnawing at me for claiming my rightful “daddy tax” on the kid’s loot. What gnawed on me was probably the sheer amount of it I consumed.

OK, back to Friday. After my wife drove me to the hospital, I went straight to the lab for the blood draw and per my suggestion, they started an IV (since I would need one for my infusion anyway), drew blood, flushed the line and sent me on my way. I’m going to pause here to note that most of the hospital staff were wearing Halloween costumes and the phlebotomists in the lab, with one exception, were all dressed as vampires because…..well, you get it. I got the exception, a sparkly blue unicorn who whisked me in and out of the lab and coordinated everything with the infusion clinic. Hindsight being what it is, I should have taken this as a sign for the rest of the day.

My neurologist, (who was dressed as a doctor), was waiting for me at the entrance to the infusion clinic and whisked me, (there was a lot of efficient whisking Friday), to a procedure room and refilled my baclofen pump so quickly that I didn’t get my phone out in time to take a dramatic needle in the belly picture for this post like I had planned on. Here’s a very non-dramatic, bandage on the belly picture instead.

He assessed my spacticity, checked my muscle tone, inquired about physical therapy, and upped my baclofen dosage by 10%. We chatted about recent MS research, my recent bout with Covid, and etc and then I was off to infusion.

Once there, I transferred to a recliner, wrapped up in my infusion afghan, was premedicated and then infused. I was cleared for the fast rate prior to the last infusion, so including the observation time after, I was done in about 3 1/2 hours. I got my flu shot at the clinic right beside the parking deck and we went home.

Having my arm hair pulled out when they removed the Tegaderm dressing over the IV site was literally the worst part of the entire day. So much for a thrilling, “here’s what happened to me”, post. I guess there’s always next time.

P.S. I’m not dissapointed in the least.