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Background Life with multiple sclerosis

Pride & Practicality

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.

3 replies on “Pride & Practicality”

Hello Ben.

I believe many if not most people with MS go through the same issues, as well as people with very serious life-changing disabilities. It’s part of the existential changes we go through when there’s something that fundamentally changes in our lives. I’m not trying to sound high-minded or like I’m some expert, but it sounds like you’re struggling with this and I want to try to help with my experience if I can.

I went through the same… stuff you’re dealing with (it is hard to find words sometimes). It’s difficult to deal with this stuff because the changes come from almost literally nowhere, and are fairly unpredictable even though there’s plenty of information that all these things could happen to any one of us. But the reality hard part is accepting that the things are happening to us. Yeah, I could let other people help—because it’s more practical and pragmatic, and definitely saves time—but that could mean that I have to acknowledge and accept that the disease has gotten to that point, and I don’t want to. Not now… not yet. I want to keep as much normalcy as I can for as long as possible. The people who care about me can see me struggling and how frustrated I am and how agitated I get, but unfortunately their good intentions and wanting to assuage my suffering can make things worse. It’s the darn tenacity to fight adversity, because that’s the true nobility… to fight the good fight, right?

This may not even apply to what you were talking about but hopefully it helps.

Hi, Christopher! I did a piece awhile back about working on cars, (something I once enjoyed). I hadn’t even changed my own oil in years, but I knew that I had done it and could if I wanted to. If I had the ability now, I doubt I’d take the time to do it, but when the ability went away, the choice to not do it, that’s what I missed. That’s definetly pride, but not foolish pride, or misplaced pride.

I want to do something on good, well meant, intentions and how they can be unintentionally painful, but I haven’t figured it all out yet.

Ben

Yeah, I understand. Choice is very important… and I lost pretty much all mine. I have to go by everyone else’s schedule, rules, etc. many times I don’t even have the choice to not do something. About the only thing I have any choice with left is whether I continue going or not, and I’m definitely not ready to make that choice yet.

As far as good intentions failing or failing miserably, that happens regularly in my life mostly with my relatives and good friends. I have plenty of examples if you’re getting stuck.

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