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.