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.
3 replies on “I Understand”
Hello Ben.
I never understand. The disease, or condition, or however it’s categorized (still haven’t gotten that clear after 17 years), drives me nuts with all its peculiarities and U-turns and unpredictability. The CNAs and nurses in the nursing facility always treat me as if I have the answers to everything about my disability. Most of the time I can’t explain or accurately describe squat, and everyone else just throws their hands up—pretty aggravating. Whenever I meet a new staff member (which is fairly often), they usually say, “yeah, I have/had a friend/cousin/grandparent/etc with MS.” At least that means that he or she is familiar in some way (maybe). It just takes a few more questions to weed out the shmoozers. I try not to step on people too hard when they hit my ‘prickly switch,’ unlike I used to be when I was really impatient with the world and what seemed like stupidly or just ignorance to me. I was influenced a lot by my late mom, and I really try hard to squeeze my lame feet into those other peoples shoes, even when I’m roiling inside and just want to lay into them. I actually do understand your aggravation, but not how you experience MS, even though there may be some similar stuff. It’s actually my brother who flies off the handle with people I interact with. But he’s just really protective, and doesn’t suffer fools gladly. He is also experienced a lot of stupidity here at the facility firsthand, and some of it has been a little terrifying. Not exactly what you’re talking about but but I definitely get your points, and really appreciate this post. Wishing you the best, sir.
Thanks Christopher! I sometimes feel guilty for over reacting to what is probably nothing but well intentioned small talk. People just say “I understand” in the same way that they (we) say, “I’m sorry”, at a funeral. Most of the time it’s just filler for when you’re struggling to find something and feel like you should say something. Two of my kids play baseball and I never get mad when a small child at the ball park asks things like, “why don’t your legs work?”, or (my favorite), “How do you go pee?” (same way you do kiddo, just with a little creativity). I think it’s because it’s asked with genuine, innocent curiosity rather than a feeling of needing to say something. We can tell the difference.
No one will ever understand. We all have different DNA, Circumstances, experiences, are all different for all of us. I raised you but you were not raised as I was or experienced the same things I did. I have walked through divorce with friends and not one was the same. BUT God. He understands. He made us. That is why He said He is the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. Butchie and I don’t understand your affliction but we still pray for you because we know the God who has comforted us in all our afflictions. We don’t have to understand we just take you to the Father who does understand. Mrs. Butch always asks about you when I go to visit. She will wonder out loud why she is still here at 98. I know it’s because she is praying for my boy.