pride - 18Disabled

I have literally texted this photo across the house to my wife when I needed help in the shower.

I have been struggling to write this for months. I know what I want to say, but I can’t get it down in writing in a way that makes sense…..not even to me. It’s not an uncomfortable, or even embarrassing topic. It’s not difficult for me to talk about, but it is difficult for me to put into words. Does that ever happen to anybody else?

I’m pretty sure I’ve mentioned before that I use a wheelchair. “Use” a wheelchair…….that somehow sounds better than, “confined to” a wheelchair, or even, “in” a wheelchair for some reason. Semantics aside, I do “use” one, because I can’t walk. I can stand for very short amounts of time if I have something sturdy to hold onto and I do have limited movement in my feet and legs, but I cannot take a single step. My hands and arms, torso, eyes……….ok, everything from head to toe, is affected to some degree by multiple sclerosis and I need help, both mechanical and personal, in order to get through every day.

I’m not telling you that to depress you, or (gag!) elicit pity, but to make a somewhat confusing (to me anyway), amateurish point about pride, dignity, and practicality.

Back when I was a student at the Special Forces medic course, we often joked that having to constantly be a “patient” for each other erased whatever sense of pride and dignity we might have had before. If you were in a more senior class and happened to see a newer class walking down one of the hallways, staring at the floor, not speaking to, or looking at each other, you knew that they had just passed the hurdle of prostate check day, testicular exam day, etc, and that their senses of pride/dignity had taken an abrupt jolt. You get over it, of course. Eventually, you have cut the clothes off all of your fellow classmates, have poked each of them with needles, gloved fingers, and all manner of uncomfortable tubes, and vice versa and what you once considered undignified, isn’t anymore. So what, if anything changed?

Here are the “book” definitions of pride and dignity.

pride/prīd/noun

1.a feeling of deep pleasure or satisfaction derived from one’s own achievements, the achievements of those with whom one is closely associated, or from qualities or possessions that are widely admired.

dig·ni·ty/ˈdiɡnədē/noun

1.the state or quality of being worthy of honor or respect.”a man of dignity and unbending principle”

By those definitions, I actually left the medic course with more of each than I started with. Did my concept, or definition of these things change, did I realize that my personal list of things that I once thought were beneath me, weren’t, or was it just my practical side showing through?

prac·ti·cal·i·ty/ˌpraktəˈkalədē/noun

1.the quality or state of being practical.

2.the aspects of a situation that involve the actual doing or experience of something rather than theories or ideas.

If that’s the case, does that mean that I’ve decided that something is undignified, but the practical thing is to do it anyway, or does my practicality decide certain things don’t belong in the undignified category and removes them from the list? The short answer is, I don’t know. If you do, chime in with a comment.

What I do know is that my pride and dignity feel intact, but………different(?) than they were before multiple sclerosis. Did they change, or did I change because of practicality?

For example, I can put my own shoes on, but it takes me 5-10 minutes and expends energy that I need for transfering to my wheelchair, the car, and so on. My wife can slip both shoes on in well under a minute, so especially when we have places to be, this is, by far, the practical thing to do. It’s not undignified, but having someone do something for me that I had done since childhood was tough at first. Since I snapped the words, “I can do it myself!”, more than once, it was probably my pride that needed to shift rather than dignity. Maybe that means pride changes while dignity doesn’t. Do I just confuse the two and practicality is what eventually separates them?

More often than not, I need help in the shower. Again, I can wash myself, but it’s way more practical, goes faster, uses less energy, etc, if I have help. My wife is my caregiver and takes great care of me. We’ve been married almost 13 years and have three kids together, so it’s a cinch to say that she’s seen me naked and/or vulnerable before. Why then is this still a difficult area to ask for, or accept help with? Is it that, “I can do it myself!”, pride rearing its head again, or is it dignity this time? Is that why being practical about it doesn’t negate it all the way? Does practicality only work on pride? Is it that I feel like there’s a big difference between asking for the 30 seconds it takes to put shoes on and a 30 minute shower, or because I (and/or my dignity) want to keep the difference between wife and caregiver in place?

Hmm, I got some of it down in writing, but feel like I barely scratched the surface. I feel like I understand a little more, but still don’t know anything. If you thought this column was going to have all the answers, get used to disappointment. I thought learning about the physiology of MS was going to be the hard part. Turns out, an “I don’t know” answer there is a lot easier to handle.

MS Ego

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.